Disability

Cazbarr - Family sitting on a sofa with an empty wheelchair beside them

Wheelchair Life – Is This A Fate Worse Than Death?

Leave a Comment / Disability / By Cazbarr / 09/02/2023 21/02/2023

Society tells us that being in a wheelchair is terrible, a fate worse than death! Telling a wheelchair user “how terrible it must be to be stuck in that” or “how they couldn’t/wouldn’t want to be in a wheelchair themselves!” IS NOT COOL!!

Ableds have no idea of what it’s like to be a wheelchair user, so what gives them the right to tell us how awful it is? I’m here to tell you my story of how I became a full-time wheelchair user & why I disagree with the above statements!

How I Became A Full-Time Wheelchair User

Cartoon Cazbar sitting in a wheelchair with tank tyres

I became a full-time wheelchair user roughly 20 years ago. I was born with (Arthrogryposis) and walked using calipers until becoming a full-time wheelchair user. Unknown to me (because my disability is very rare and still is today), Scoliosis can be a side effect of my disability. Scoliosis caused so much pain in my back, it prevented me from walking completely.

My back was getting worse & worse and my ability to walk was becoming more & more difficult. I visited the doctor who referred me to the pain clinic. Which in all honesty, from my own experience and from hearing others, is pretty much a waste of time. It’s like a stopgap so “statistics” look better than they really are. As I got no joy or relief from there, I was referred to Orthopaedics.

It was through them I had facet joint injections in my spine, which only worked for 3 days. Then it was onto radiofrequency facet joint injections but this didn’t work at all.

Since then, the medical profession has seemingly washed its hands off me. They ceased contact with me. No advice on how to deal with the pain outside of taking painkillers.

Fearful

Facing the rest of my life in a wheelchair was daunting & scary. There is no escaping that, no matter how positive of a person you are and I would class myself as a pretty positive person. Nobody wants to be disabled but…..I do believe being born with a disability is easier to deal with than becoming disabled later on in life. I’ve experienced both! I was born with my disability and grew up knowing no different. Later in life, I had my independence taken away from me. I now had something to compare to. I now had to grieve the life/independence I lost.

At this point in time I was 33 years old with a son aged 12. I was used to doing everything for myself and my son. I was terrified as to how I was going to cope in general. How was I going to look after my son? I had no choice but to find other ways of achieving what I could do previously!

I’m not going to tell you life in a wheelchair is wonderful and a bed of roses. It isn’t! But it’s most certainly not a fate worse than death! Yes, you have to be a resilient & determined person. A problem-solver! As life throws many curve balls that we (disabled people) must navigate on a daily basis. Live with the knowledge that in most cases, there is always a solution to these curve balls.

I know it’s hard, but it’s not what you’ve lost that counts, it’s what you have left.
Billy Isle – Amputee & atrificial limb manufacturer

Coping

Wheelchair Life - Is This A Fate Worse Than Death? - Male wheelchair user playing wheelchair basketball.

All in all, I would say it took me around the year mark to finally accept I was now a full-time wheelchair user. Learning how to do simple tasks would make me scream and cry every time! These tasks were now more difficult and took 3 times as long to accomplish. I not only had to learn how to do things from a sitting down position but I had to deal with my poor strength in my arms and hands. This made lifting and opening things difficult and painful. I was also in a manual chair which made self-propelling impossible. I felt useless and a burden. (Even the strongest of us can wonder if it is worth it)……But I can tell you, YES, IT BLOODY WELL IS!!!

Everyday life as a wheelchair user can be difficult when society & infrastructure prevents me from doing what I want but thankfully the good far outweighs the bad. The saying: “I’m only disabled due to societal barriers” is probably one of the truest sayings I’ve ever heard! If I’m visiting a venue and the only entrance is by steps, then I cannot enter. If there was more education & understanding about disabilities, I wouldn’t feel so self-conscious about my physique caused by my weak & miss-shaped bones. (I get extremely embarrassed when I shake hands or have to hand over money to a cashier as people either pull away or let money fall onto the counter).

My husband was a massive help throughout all of this. He would be positive when I wasn’t. Helped me come up with solutions that helped me complete tasks I would struggle with. In fact, he still does today. I have asked him many times to help me come up with a solution to a problem I may have.

Accepting

Being a wheelchair user has not stopped me from doing what I wanted to do. I’ve been to many places and done different things, from, Scuba Diving, a long weekend to Vegas to see Billy Idol in concert, Cruising 3 times with a 4th in the pipeline. All giving me wonderful memories that I can tell to my 4 grandchildren (at present lol). More planning is needed of course but it is so worth it!

I had to learn how to redo many things, including the simplest of things like making a cup of tea to getting dressed, all from a sitting down position. I would go to stand up and suddenly realise that I couldn’t. This tortured me every time and made me so frustrated and angry. I would take it out on anyone close to me at the time. Understanding this is all quite normal and part of the healing process is where more understanding needs to come into play. I know this helps as I (unknowingly) needed to know this after my heart attack. Just knowing other people feel the same way and that what you’re experiencing is normal can be half the battle.

Friends and family (and ourselves) forget we are grieving the loss of our old life, this grief is just like any other grief. It takes time to deal with this grief. You will go through many emotions on a daily basis. With a positive attitude and time, you WILL get there. You will learn to adapt to your new way of life!

The longer I was a wheelchair user with limited strength and grip, the more help I needed. I needed help with showering, dressing & cooking. Sitting down made tasks much harder for me than they were when I was able to stand.

Life Changes

Being a wheelchair user means (as I’ve said previously) you must learn to do things differently than you once did. This can also mean adapting your home. Unfortunately, if you own your own home, there is little to no help that you can get financially, or from your council. You have to do everything yourself. If you are a council or housing association tenant, they should be able to help you.

Your first port of call though should be to get yourself an OT (Occupational Therapist). Occupational therapy aims to improve your ability to do everyday tasks if you’re having difficulties. You can get occupational therapy free through the NHS or social services, depending on your situation. You can:

Speak to a GP about a referral
Search for your local council to ask if you can get occupational therapy

You can also pay for it yourself. The Royal College of Occupational Therapists lists qualified and registered occupational therapists.

How Can An OT Help

Occupational therapy can help you with practical tasks if you:

are physically disabled
are recovering from an illness or operation
have learning disabilities
have mental health problems
are getting older

Occupational therapists work with people of all ages and can look at all aspects of daily life in your home, school or workplace. They look at activities you find difficult and see if there’s another way you can do them.

Source: NHS UK

Benefits

I am in no way gonna enter the minefield of DWP benefits but, you may well be entitled to some benefits. These could include, PIP, ESA, Universal Credit and if you have someone who helps/cares for you on a daily basis, they may be entitled to a carer’s allowance. The best people to talk to is Jobcentre Plus where they have all the up-to-date information.

Don’t miss out on what you are entitled to, JCP will not voluntarily tell you what you can claim for. Speak to other disabled people to find out what other benefits there might be. Another good source of information is the CAB.

Body & Mind

The words mental health on top of blank scrabble tiles.

Some of you reading this are thinking, I could never do that! I couldn’t cope! Let me tell you this, at first, yes it’s extremely hard to accept you need help after being so independent, I know! But once you get past this stage and you will, it does get easier, to the point of it becomes normal every day.

Mindset is paramount though, having a positive mental attitude really is the key to your coping and accepting. Another extremely important thing is to have supportive and understanding people in your life. This includes family. I was very fortunate to have family around me that were supportive and understanding. Something else that is crucial, counselling and/or supportive groups. I was sceptical until my heart attack and I joined a counselling group. This helped me understand that my feelings and attitude were very normal.

You either get better or you get bitter. It’s simple. You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you!
Josh Shipp

Don’t let negativity in your life wherever possible, especially in your transition stages. It will hold your progress back!

My Final Thoughts

I’m living my life no differently than anyone else. I have a roof over my head, and food on the table that I am extremely grateful for. My family of two wonderful grown-up kids. I go visiting my grandkids, I holiday, I have friends, I socialise and I have sex! Would I say this is a fate worse than death? HELL NO!! Even with the trials & tribulations of daily life and some of society’s attitudes…..I seriously wouldn’t change a thing.

Links

If you would like to work with me don’t hesitate to Contact Me. Feel free to leave a comment below.

Cartoon strip illustrating a person becoming a full=time wheelchair user

Facilities Available To Disabled People

Leave a Comment / Accessibility, Disability / By Cazbarr / 29/10/2022 21/01/2023

Facilities available to disabled people – There are many facilities available to disabled people. The problem is, not everyone is aware of them, hence why I have written this blog. Today, I hope you find a facility that you weren’t aware of before and indeed benefit from it.

I will talk about Motability, Taxi card schemes, freedom passes and even Radar keys. Don’t worry if you are unfamiliar with any of these, you will understand more as I take you through them!

Eurokey Project

The Eurokey Project is a facility similar to the Raday key. It enables physically impaired people to independently gain access to disabled sanitary facilities and facilities with a unit key (presumably) across Europe. At the time of writing this, there is currently a time frame of up to 8 weeks for orders to be processed.

Cost: Key – 23 Euros
Key with Locus Disabled Toilet Directory: 30 Euros (correct at the time of writing this). Please always check the website for an up-to-date price.

Eligibility

The key is only handed out to people who are dependent on disabled toilets.

The German severely disabled person’s pass is considered an entitlement if
• the mark: aG, B, H, or BL
• or the mark G and the GdB from 70 and upwards is included.

As soon as the severely disabled person’s pass or proof of entitlement is available or has been transmitted with the order, we will send you the invoice in advance.

The following are still entitled to subscribe:

severely/exceptionally handicapped;
Wheelchair user;
stoma carriers;
Blind woman;
severely disabled persons who are in need of assistance and may need an assistant;
multiple sclerosis,
Crohn’s disease,
Ulcerative colitis sufferers and
People with chronic bladder/bowel disease.

Medical proof is always considered sufficient if a disability cannot be proven otherwise. This applies in particular to persons from countries that do not have a comparable identification system. The European parking card for severely disabled persons can also be used as proof here.

Source: Euro WC key: CBF Darmstadt (cbf-da.de)

Just Can’t Wait Toilet Card

Just can't wait card from bladder & bowel company

Just Can’t Wait Toilet Card is from the Bladder and Bowel Community. They use the universally acknowledged W.C. signage, giving you the benefit of discreet and clear communication for those moments when you just can’t wait to use the toilet.

The Just Can’t Wait card is now available to download to your phone.

Eligibility

No requirements, just a few questions.

Cost: FREE

Source: FREE Just Can’t Wait Toilet Card – Bladder & Bowel Community (bladderandbowel.org)

Disabled Persons Railcard

Disabled Persons Railcard can save you a 1/3 off train travel for you and an adult companion. Average savings of up to £91. They are available digitally or as plastic cards.

Eligibility

If you are disabled or have a progressive medical condition you are eligible for the Disabled Persons Railcard if you:

in receipt of Personal Independence Payment (PIP) or Adult Disability Payment (ADP)
receive Disability Living Allowance (DLA) or Child Disability Payment (CDP) at either:
- the higher or lower rate for the mobility component, or
- the higher or middle rate for the care component
visual impairment
hearing impairment
epilepsy
receive Attendance Allowance, Severe Disablement Allowance or Pension Age Disability Payment (PADP)
get War Pensioner’s Mobility Supplement
receive War or Service Disablement Pension for 80% or more disability
buy or lease a vehicle through the Motability scheme

Cost: 1 Year – £20 3 Years – £54

Source: Disabled Persons Railcard | Official Retailer | National Rail (disabledpersons-railcard.co.uk)

Fuel Service

The Fuel Service app provides disabled drivers with all they need to refuel their cars. FuelService tells you which nearby stations have assistants available who will refuel your car. You can also use fuelService by dialling our interactive voice service or by sending an SMS TXT message.

Cost: FREE

Source: fuelService – Helping disabled drivers refuel their cars

Blue Badge

Blue Badges help people with disabilities or health conditions park closer to their destination. You can apply for a badge for yourself, on behalf of somebody else or an organisation that transports people that need a Blue Badge.

People who automatically get a Blue Badge

You automatically qualify for a Blue Badge if you are aged 3 or over and at least one of the following applies:

you are in receipt of the higher rate of the mobility component of the Disability Living Allowance (DLA)
receive a Personal Independence Payment (PIP) because you can’t walk more than 50 metres (a score of 8 points or more under the ‘moving around’ activity of the mobility component)
registered blind (severely sight impaired)
you receive a War Pensioners’ Mobility Supplement
received a lump sum benefit within tariff levels 1 to 8 of the Armed Forces and Reserve Forces (Compensation) Scheme and have been certified as having a permanent and substantial disability that causes inability to walk or very considerable difficulty in walking
you receive the mobility component of PIP and have obtained 10 points specifically for descriptor E under the ‘planning and following journeys’ activity, on the grounds that you are unable to undertake any journey because it would cause you overwhelming psychological distress

Eligibility

There are many other reasons you may be entitled to get a blue badge, please visit the website for a full breakdown and more information.

Cost: Individual councils charge different prices, please contact your local council for more information.

Source: Who can get a Blue Badge? – GOV.UK (www.gov.uk)

Motability

Motability is a scheme where you can exchange your qualifying mobility allowance for a brand-new car, Wheelchair Accessible Vehicle (WAV), scooter or powered wheelchair.

Eligibility

For a full list of benefits and more information about eligibility, please vist their website: Allowances and rates | Motability Scheme

Cost: Individual to each applicant

Source: Motability Scheme | Lease a car, WAV, scooter or wheelchair

Disabled Persons Freedom Pass

Freedom Pass – The travel pass for disabled people allows free travel across London and free bus journeys nationally. A Disabled Freedom Pass is valid all day every day. London Councils fund all the journeys that are made at those times. Full details: Bus | London Councils

Eligibility

To be eligible for a disabled persons Freedom Pass:

Your sole or principal residence in London And

Have any of the statutory disabilities listed in the Transport Act 2000. Full details: Disabled persons Freedom Pass eligibility | London Councils

Cost: FREE

Source: Disabled persons Freedom Pass | London Councils

Taxicard

Taxicard offers subsidised travel in licensed taxis and private hire vehicles to London residents with serious mobility impairments or who are severely sight impaired. It enables members who have difficulty in using buses, trains and tubes to get out and about.

Application details: Apply for Taxicard in your borough | London Councils

Eligibility

I haven’t been able to find any information regarding this on their website.

Cost: Again, I’ve no information. I believe the card is free and you just pay a subsidised taxi fare.

Source: Taxicard | London Councils

Radar Key

Radar Key The National Key Scheme (NKS) offers disabled people independent access to locked public toilets around the country. Toilets fitted with National Key Scheme (NKS) locks can now be found in shopping centres, pubs, cafés, department stores, bus and train stations and many other locations in most parts of the country.

Eligibility

None

Cost: £5.00 (price correct at time of writing this)

Source: The official and only genuine Radar Key – Disability Rights UK

Passport Services If You’re Disabled

There are free services and facilities to help you with your passport application if you’re disabled.

Source: Passport services – Gov.uk

More Facilities

I haven’t gone into too much detail as each website explains things about each facility and there is no point boring you with repeating the information. I hope you have found something that helps you and you can benefit from. Of course, if you have any questions, do drop me a line and I will do my best to help you.

As I become aware of more facilities, I will add them to this list so keep checking back. If you know of a facility that can help disabled people, please leave a comment below.

Related Blogs

Blue Badge is Changing

Disabled Facilities: Do You Abuse Them? I Bet You Have!

If you would like to work with me don’t hesitate to Contact Me.

Cartoon strip about facilities for disabled people

My pimped up wheelchair with red cushion covers

Wheelchair Life – Ignorance, Personal Space Invasion & Damage!

Leave a Comment / Disability, Health / By Cazbarr / 01/09/2022 25/11/2022

Wheelchair Life – Ignorance, Personal Space Invasion & Damage! – I have been a full-time wheelchair user for approx 18 years now. During this time, I have been sat on, kidnapped in a foreign country, (yes, you read that right) climbed over, all by adults!! As a wheelchair user, forget personal space, you become a public leaning post and you are invisible!

My Wheelchair

I have an Invacare Spectra XTR2 electric indoor/outdoor wheelchair with tilt/recline. The price of my chair with tilt/recline is approx £5,500. I’m lucky enough to be eligible for an NHS electric wheelchair. (Many disabled people are not and have to purchase their wheelchairs privately). As with everything in life, there are pros & cons when taking either route. I will discuss this later on.

The price of wheelchairs (both manual and electric) can cost well in excess of £10,000. That’s the price of a family car and when the average life span of any wheelchair is 4-5 years, this can be too expensive and unreachable for a lot of disabled people!

The more modifications that are needed, like tilt/recline, elevated footrest, bigger batteries etc. all add to the cost. Recline alone is around £1000 to have put onto a chair. Can you begin to understand why we are so protective over our wheelchairs?

I’m sure most if not all full-time wheelchair users will agree when I say my wheelchair to me is the equivalent of your legs to you! Without my wheelchair, I would not even be able to get out of bed, let alone do anything else! I wouldn’t be able to live my life!

Boring!

Wheelchairs as a whole can be very boring and clinical looking. Thankfully, manufacturers are becoming more aware that not all disabled people want this. Some of us, like myself, like to pimp our rides (so to speak). Therefore, I “pimp my ride” as shown in the image above. I come up with ideas to dress up my chair and then hubby makes my ideas a reality. I feel, that my wheelchair is an extension of me and my personality, so why shouldn’t I have it portray that?

As my chair is now 5 years old and I’m unsure what chair will be offered to me by the NHS (past experiences have not made me hopeful) I recently went to a wheelchair company to see what was on the market that would suit my needs. I found my perfect chair but it would cost me £10,000. The main things I need on my chair outside of what comes as standard are: electric tilt/recline, swing away joystick and swing away leg rests. Not a lot maybe but the electric recline alone chucks on an extra grand.

While at the showroom, I saw some wicked colourful wheels on a manual wheelchair with various frame colours. When I have to remove my handmade covers and accessories from my chair, I feel like I’m in a completely different chair and it actually feels depressing sitting in it. I feel drab and dreary and can’t wait to get my covers etc back onto my chair!

As I am typing this blog up, I received an appointment to go for a new wheelchair assessment at my wheelchair service, (more on this later) but I just wanted to share that the new chair I will be getting is exactly the same chair I fell in love with at the showroom. Best part? I can change the colour of the shrouds on the chair. I am so excited!

More Than One Way to Get A Chair

To my knowledge, there are a couple of ways to get a manual or electric wheelchair:

Purchase a brand new chair privately via a showroom
Buy a new/second-hand chair on places like eBay or Amazon
Be referred to your local NHS wheelchair service (eligibility required)
Loan scheme a brand new chair via Motability (eligibility required)

I’ve created a pros & cons file for you to download below if you wish:

Pros-cons-wheelchair-methods Download

Out & About

If I’m going somewhere for the first time, I have to do plenty of research before venturing out. This will include:

Is your venue/restaurant/pub accessible? Do you have level entry? If steps, how many & how high? (My electric chair can manage a small step). Company websites fail terribly at supplying this sort of information, which then means many phone calls or emails to find this information. (very time-consuming, which in all fairness is totally unnecessary!)
Do you have a disabled toilet? Will I find it being used as a storage room, (too many are used this way)?
Can my family sit with me if going to a show, or will we be split up due to only having one carer/PA space?
Do you have disabled parking?
Internal steps?
Width of doorways

The list just goes on and on! The most frustrating thing is when you are told one thing, then arrive and find it’s nothing like what you were told. Most of the time, it means having to either find somewhere else to go or worse, go back home!!! For example. I was going out for a meal with family that came to visit. The venue was told there would be one wheelchair user in our party. When we arrived, the table we were taken to was higher than my head, with tall stools sitting around it!

When I looked funny at the waitress, she had NO IDEA what the issue was. I had to ask her how she thought I would be able to eat a meal at the table. The penny dropped! Thankfully there was another table vacant that was more suited. It’s stupid things like this that make going out anywhere frustrating and embarrassing and make you feel a burden to the people you are out with.

If companies were penalised for this treatment of disabled people, I’m pretty sure things would change very rapidly and drastically. Access would almost be perfect. Other countries can do it, so why not here? I am ashamed of how disabled people are treated in this country, I truly am.

Personal Space

My wheelchair headrest with silver spikes across the top

I’ve put metal spikes across the top of my headrest as I’m sick and tired of people who think it’s ok to lean on it!! IT’S NOT!!! (No, it isn’t illegal, I asked a police offer to be sure).

I’ve Scoliosis and suffer from severe back pain a lot of the time. When someone decides to lean on my headrest suddenly, it makes my chair jolt, this makes me jump and jars my back. This causes pain that can last several days for me. So my spikes now prevent this from happening.

Many wheelchairs cost an absolute fortune. Do you really want to be responsible for breaking something and having to pay the cost of repairs which could run into hundreds of pounds? NO? Think before using someone’s chair as a leaning post, shopping trolley or hanger! More importantly, you have no idea what a person’s disability is and how it affects a person, so you could be causing harm to the wheelchair user.

NEVER, EVER just push a wheelchair (while the person is still in the chair) without explicit permission from the wheelchair user themselves. It’s scary, invading personal space and can be dangerous!

Holiday Trauma

I was in Tunisia on holiday with my husband. We visited a local market and were browsing one of the stalls when a complete stranger grabbed my manual wheelchair and started pushing me away. I literally screamed out for hubby but couldn’t see him. I had no idea where I was being taken and I couldn’t see hubby. This terrified me, all sorts were running through my mind at the time.

It turned out, due to the jewellery I was wearing, this man saw this and took me to what I assumed to be his friend’s jewellery shop. Just so I could get away, I ended up buying a bracelet and finally hubby caught up with me and we left.

Travelling

In my own vehicle, I’m fine. I know my chair is tied down securely and most importantly, safe! My WAV has been made to my requirements. Anywhere else though, is a roll-of-the-dice situation. Let’s take the biggie, air travel!

Airlines, baggage handlers and staff, in general, do not treat our wheelchairs with the respect they deserve! It angers me so much when I hear about another person having their wheelchair damaged or destroyed purely because airlines are ignorant and/or incompetent.

This kind of treatment of our wheelchairs (which is primarily the same as ableds LEGS) is disgusting and definitely puts disabled people off from flying. Maybe this is the airline’s intention!

Wheelchair Damage

Broken wheelchair sat next to an aeroplane.

On average, airlines damage 28 wheelchairs a day in the United States ALONE! Can you imagine how high that number raises worldwide? If airlines broke that many passengers’ legs, there would be uproar and probably no longer be in operation! Why then, is it ok to break our metaphorical legs?

If our chairs are broken, we too are out of action, actually, we are worse off. Most disabled people’s wheelchairs are made to prescription that fits the person using it. To be without our chairs, just doesn’t mean we can no longer enjoy whatever trip we were taking, we are now in severe pain having to use a mainstream non prescription off the shelf wheelchair.

Some wheelchair users rely on headrests, body straps to help posture and head controls so they can move their own chair. To be without these is beyond comprehension! More importantly, for airlines to be allowed to continue this treatment without any repercussions is discrimination and downright disgusting!!

Links

What To Do If Your Wheelchair Is Damaged

CAA – Travelling with mobility and medical equipment

Hotels Don’t Offer Accessible Family Rooms, Is This Discrimination?

If you would like to work with me don’t hesitate to Contact Me. Feel free to leave a comment below.

Medical Infrastructure Excludes Disabled People – Results In Preventable Deaths

1 Comment / Disability, Health / By Cazbarr / 24/05/2022 29/10/2022

Disabled People Excluded From Medical Treatment! – You would think hospitals would be the best equipped for disabled people, considering how many patients arrive in wheelchairs and/or walking sticks. Sadly, this is not the case!

As a disabled person myself and my recent breast cancer journey, I have had quite a few dealings with the medical profession. Different hospitals, departments, and staff, doctors, nurses and oncologists. I am dumbstruck as to how excluding the health profession (as a whole) can be. This exclusion causes many disabled people from receiving the treatment they need. This can and does turn into life-threatening situations and yes, even death! This is my experience!

Before I go any further, this post is not directed at any one person, department or hospital. It’s a general overview of the medical profession’s infrustructure, highliting why so many disabled people can’t get the treatment they need. Right now, so many health professionals are putting their lives on the line for all of us. I’m so grateful for the treatment I have/am receiving.

My Experience

Considering the number of patients that a hospital treats, you’d think they would be better prepared for all walks of life. I’ve been in and out of hospital all my life and in this time, I have seen some positive changes, especially with attitudes but unfortunately, a lot of improvement is still needed.

Infrastructure is probably THE biggest issue, it definitely leaves a lot to be desired. Beds too high and not height adjustable and if they are height adjustable they still don’t go low enough. Disabled toilets that are not fit for purpose. Clinic rooms are too small to allow wheelchair users and their companions. The list goes on and on.

My experience as a patient in the medical profession spans over 50+ years. During this time I’ve had over 30 operations just related to my disability. I have been poked, prodded, a guinea pig gawked at, told if I bathed in Lourdes baths I would be able to walk without my caliper’s and even forced into a pair of new style calliper’s with the promise of being able to revert to my old ones if I didn’t like them. (A lie). My favourite, however, is being told ALL my problems would be solved if I lost weight! (I was seeing a so-called professor at the time regarding my vertigo).

Hospital Equipment

Equipment is probably the biggest reason disabled people can’t get the treatment they need. Take my radiotherapy treatment for my breast cancer. There was a lot of concern as to whether or not I would be able to get/off the radiotherapy bed. A “trial run” was arranged where I was taken to their CT scanner, (where they take patient measurements before treatment starts). I was able to transfer (with the help of hubby) on and off the bed. I was also able to keep my arms above my head using the stirrups attached to the bed.

So you can imagine my shock when in my first session of radiotherapy, I was unable to get up onto the bed. It was only then I was told the CT scanner bed can be lowered more than the radiotherapy bed! The point of the trial run then? Thankfully they had a hoist that I used. But what if they didn’t have one? I would not have been able to have radiotherapy.

Many patients have had treatment cancelled because of this very reason. CT beds or MRI beds being too high, a hoist is not available! How many patients have died because they can’t be examined or get the correct diagnosis or treatment? I have no idea what would have happened to me if I had been unable to get on/off the radiotherapy bed! What good are medical advancements if not EVERYONE can access them?

Disabled Toilets

Now we all know how terrible some disabled toilets are being not fit for purpose! A hospital of all places (where wheelchair users, patients on crutches etc are being treated) you’d expect to be the one place you’d not have a problem, right? Wrong! I have used so many different toilets in so many different hospitals and you would be shocked at how few of them I was able to use.

One’s where I’ve wheeled in facing the toilet and then can’t even close the door no matter how close I’ve got to the toilet, let alone transfer!

Disabled toilet at a private health clinic with a sign saying "Less Abled WC" — The sign says “Less Abled WC”

Patient Notes

The medical profession should have a system in place where patients’ needs are noted. I’m partially deaf, a fulltime-wheelchair user with IBS among many other ailments. None of this information is noted in my medical file.

If this information was readily available, this would make appointments run far more smoothly and quickly. I would not have to repeat myself at every appointment I have regarding my already existing medical conditions. As a disabled person, it takes all my energy to get ready and travel to my appointment. To then have to use what energy I have left to reel out my entire medical history, family medical history and any/all medications I am taking BEFORE even discussing why I am in front of you is exhausting, to say the least!

Having this information would also aid in having the right equipment available if a transfer is needed for an examination or treatment. Like at my radiotherapy treatment. The hoist (thankfully) belonged to that department so fetching it didn’t take too long. Once it was recognised I needed the hoist, it was always waiting for me at whatever machine I was on for that day. This proves having important information regarding a patient’s mobility/disability is extremely beneficial!

Mammograms, every time I go for my appointment (at the same place), their first words to me are “Oh sorry, we don’t have the facility to do wheelchair users”. I then have to explain (in detail) how I can remove my armrest and physically sit in a position to enable my mammogram to go ahead. There have been many times I have had to explain I have done this in the past on their machine at their hospital.

Hospital Letters To GPs

How many times have you received a copy of a letter to your GP from the hospital after your treatment and found it to be a fairytale rather than non-fiction? I am shocked at how many times my disability has been wrongly described, or how my disability/conditions affect me. It goes to show just how little the Dr/Surgeon/consultants etc actually listen to the patient.

This is most distressing when it is done to your face in the respect that you are made feel your concerns, illness etc are all in your head! After my heart attack, I suffered excruciatingly from vertigo. On a daily basis, I felt nauseous and dizzy. I couldn’t see properly, focus on the TV or read. Constantly felt like I was going to fall out of my chair or the bed at night. It affected me so badly that I didn’t even want to get out of bed each day. I became rather depressed over it all. Eventually, after a long battle with my local ENT clinic, I was given an appointment with a vertigo professor.

What a complete twat he was! He wanted my whole life history, I mean EVERYTHING! Only then to tell me if I lost half my weight, all my problems would be solved! I swear I am not exaggerating one bit. This dumbfounded me, something that very rarely happens to me. I left in tears! Here I was, not wanting to get up each day, unable to do basic functions, drive or communicate effectively with family & friends and he told me the solution was to lose weight?? AND HE WAS A PROFESSOR!!!!!!

Your Attitude Stinks

Hand holding a round card with a sad face emoji

Over the years, attitudes (believe it or not) have somewhat improved. There is still so much more improvement needed but I think it’s heading in the right direction, just not quickly enough.

My daughter had to go for an ultrasound scan as a young teenager. She wanted me to go in with her as it was more of a female issue. When the nurse came out to call her in, I moved to go in with my daughter and the nurse just sharply said “There’s no room for that thing”. I asked her “what thing” and she pointed at my wheelchair. This was in the waiting area in front of other patients, I was mortified! I was made to feel like a failure as a parent. I wasn’t able to be there for my daughter when she needed me. Who on earth has the right to make anyone feel this way? Especially when it turned out to be unnecessary?

Her Dad went in with our daughter (yes, she was asked would she prefer to make another appt or have her Dad go in with her). After the appointment, hubby explained there was ample room for me to have been able to go in with our daughter. I was furious that our daughter couldn’t have her Mum in with her for no reason whatsoever! I made a formal complaint, for all the good that done!

After this rotten incident, I was extremely nervous going to any and all appointments for the fear of the same treatment. Thankfully, they are far and few between but it only takes one!

Who’s The Expert?

I have lived with my disability/illness for 52 years. How long have you studied my disability specifically? When I tell you something is wrong, DON’T brush it off! Don’t tell me it’s all in my head, or caused by my anxiety, stress, weight etc, etc, etc. Bloody well investigate further! I live with my conditions on a daily basis, I know my body and how it works/reacts. So when something is wrong I am not looking for attention, or wasting your time.

If I gather enough energy to get to a GP appointment about something, I have already waited on it for weeks, if not months or years. Telling me to keep an eye on it and book in again if it’s not better is counterproductive as mostly I now have to recover from the energy that has already been spent. I am my own expert when it comes to my body/condition. Respect my experience, listen to me and be willing to learn from me.

If I say my disability is acting up or a cannula isn’t working, I’m almost always proven right. Do you listen? No! I then have to face the consequences of your ignorance. Like the time I had to have an echocardiogram with dye. I told you the cannula was not in my vein but you insisted it was, my arm started to swell as you injected the dye. So which one of us was right?

Calipers

I have always worn calipers to walk, up until roughly 18 years ago when I was diagnosed with scoliosis. As a child, my calipers were supplied and repaired by a company hired through my school. He was lovely every time I needed to see him, friendly & helpful. Then he got an apprentice! That’s when everything turned to shit for me.

This apprentice decided he knew better than everyone else! He had invented a new style pair of calipers made out of nothing but thick plastic and guess who was the guinea pig? They not only looked ugly but were extremely uncomfortable to wear. I got blisters, and sores that bled. They were the biggest heap of crap I had ever worn.

He tried selling the idea to me chatting about how I could wear “normal shoes” with them and if I really didn’t like them after a trial run, I would be able to go back to my original pair. (You know, the ones I had NO problem with WHATSOEVER!!). After the trial run, I went back to him and told him I hated them, how they hurt me and wanted to go back to my old pair. He said this could no longer happen as my old pair had been destroyed! I was mortified!

Many years later as an adult, I was now under Hammersmith hospital’s surgical appliance department. (you know where I’m going don’t you?). Guess who was there? Yep, the idiot who lied to me. I told him in no certain terms would he be putting me back into those horrible plastic things. Needless to say, he remembered me and nearly shit himself and of course, totally agreed with me.

Waiting

Have you noticed how 90% of all waiting areas do not cater for wheelchair users? With over 1.2 million wheelchair users in the U.K, you’d think there would be a couple of places for us to wait.

Waiting areas are normally very small and cramped with no room for wheelchairs, electric or otherwise. Hospitals use internal wheelchairs to transport patients from one department to another. On top of other patients who use wheelchairs. Hospitals should be aware of the number of wheelchair users that would require space to wait their turn also. Yet sadly this is not normally the case.

Backtracking to patient notes, since my heart attack, I suffer from anxiety. As an IBS sufferer, waiting is a big issue for me as waiting for an appointment causes me a lot of anxiety. My anxiety causes my IBS to flare up. I can and have started worrying the night before, so by the time I turn up for my appointment I’m already a wreck. It would be really helpful if staff knew this so that if I’m rushing back and forth to the toilet and not in the waiting area when called, at least they may understand why. Of course, the ideal solution is to not have to wait too long.

Then there’s the “Oh, didn’t realise you were in a wheelchair, can you get out of it at all, not sure there’s enough room for it”? A lot of appointments are taken up with this sort of conversation and then them running around looking for an alternative room. This only prolongs the waiting time, which then makes my anxiety worse as now I feel a burden, then my IBS gets worse so needing the toilet again!

Conclusion

The health profession as a whole still needs massive improvements. Some improvements have already happened and seem to be moving in the right direction but it’s just not improving quickly enough. Advancements are also happening but these are no good to people who can’t access them due to failed accessibility!

Related Blogs

PillTime: Home Deliver Pharmacy Service

Electric Wheelchair Assessment: Being Told What I Do & Don’t Need As I Obviously Don’t Know My Own Disability!

If you would like to work with me don’t hesitate to Contact Me.

My Depression Is Made Worse By My IBS & Anxiety.

Leave a Comment / Disability, Health / By Cazbarr / 13/09/2021 13/09/2021

IBS and Anxiety are two very debilitating illnesses, both keep me from doing what I want when I want. The pain can be unbearable when I have an IBS flare-up and my stomach feels as though it is going to explode. Other days, it can be a case of having to run to the toilet every 5 minutes.

Bloating, abdominal pain, cramping, gas, diarrhoea, constipation (or both)…any or all of these symptoms can be associated with Irritable Bowel Syndrome or IBS for short. I explain how this and anxiety affect me on a daily basis and why this makes my depression worse.

What is Irritable Bowel Syndrome (IBS)?

Irritable bowel syndrome (IBS) is one of the most common gastrointestinal disorders, with up to 20% of the population suffering from it at some point in their life. The typical symptoms of IBS include either recurring diarrhoea or recurring constipation. Some patients also suffer from both diarrhoea and constipation at different times. Additional symptoms can include stomach pain (which is sometimes relieved by a bowel movement), bloating, nausea, and wind. IBS can wax and wane, and patients may experience a few weeks or even a few months of good health before the symptoms return.

IBS is not a psychological disorder but has come to be closely linked with both stress and anxiety. Even people who do not experience IBS can find themselves needing to go to the toilet when they are experiencing stress or anxiety.

There is no specific medical test for IBS and it is sometimes called a diagnosis of “exclusion”. This means that a doctor may rule out other bowel and stomach complaints such as coeliac disease or inflammatory bowel disease before giving a diagnosis of IBS. It is very important that patients do not try to self-diagnose IBS as it is impossible for a patient to tell the difference between IBS symptoms and bowel symptoms caused by other disorders. (Source: anxietyuk).

What is Anxiety?

Anxiety is the feeling you have when you think that something unpleasant is going to happen in the future. Other words such as feeling ‘apprehensive’, ‘uncertain’, ‘nervous’ and ‘on edge’ also provide a good description of feelings linked to anxiety. (Source: Country Living).

Symptoms of anxiety – People often experience physical, psychological and behavioural symptoms when they feel anxious or stressed.

Some of the most common physical symptoms are:

Increased heart rate or increased muscle tension
‘Jelly legs’ or tingling in the hands and feet
Hyperventilation (breathing
Hyperventilation (breathing too heavily) or dizziness
Difficulty in breathing or a tight band across the chest
Wanting to use the toilet more often
Feeling sick
Tension headaches
Hot flushes or increased perspiration
Dry mouth
Shaking or palpitations
Choking sensations

Some of the most common psychological symptoms include feeling that:

You might lose control and/or go “mad”; or feeling that you might die
You might have a heart attack/be sick/faint/have a brain tumor
People are looking at you and noticing your anxiety
Things are speeding up/slowing down
You’re detached from your environment and the people in it
You want to run away/escape from the situation
You’re on dge and alert to everything around you

(Source: anxietyuk).

How I Feel Daily

Person sitting on floor with their own shadow hovering over them in a menacing way

On a daily basis, I wake up and my first thought is how will my stomach behave today. I think about where I may have to go and if I do have to go out where are the disabled toilets. If it’s a stay-at-home day then I don’t really feel too anxious, I can have pretty much what I want for breakfast. On these days, I try my best to not have to go out unexpectedly.

On days I do have to go out, I will eat minimally for breakfast (if anything at all). If I don’t eat breakfast this plays havoc with my sugar levels but is the lesser of the two evils (in my mind). I will only have one cup of tea, and all being well I will be going somewhere familiar to me, so I already know where the disabled toilets are. But even on a good day, it will always be with me..”Will my stomach turn”? It is a constant fear I now live with!

If it’s somewhere not familiar to me, this will have set off my anxiety the night before, sometimes days before so I can wake up feeling pretty rough, which can also set off my IBS. I will have already done research on where disabled toilets are. If there are none, this is a major trigger and I spend the whole time constantly thinking of all the things that could go wrong. Which again, only makes matters worse.

Frustration

The frustrating part of all of this is there is no logical explanation for my anxiety. If I have to go out and I know there are disabled toilets in the area, why do I get anxious? I have no answer to this which only adds to my frustration. When I’m frustrated I get worked up, this makes me anxious. When I get anxious my IBS flares up I feel I can never win! It really is a vicious circle!

Believe me, I have tried so hard to work out the root of my anxiety. I am so desperately want to alleviate my anxiety, IBS, stress and all that jazz so I can go out and do the things I would love to do by myself. at present, I am terrified of going out alone, so my husband comes with me most of the time.

My husband comes out with me, as quite a few disabled toilets are not equipped for electric wheelchairs as these are normally larger than manual wheelchairs, so if my IBS kicks off and I need to rush to the toilet, my husband needs to help me with transferring from my chair. Another reason, what if I get caught short while driving? If my husband is with me I can pull over and let him continue the driving.

I’ve tried group CBT, hat a flop that was. Our “therapist” showed up as and when she felt like it and never finished the course. I had 3 weeks in total!! The conclusion I have come to is that this really started after my heart attack 5 years ago. I’ve been told a major life trauma can cause anxiety for the foreseeable future which I suppose when you look at the big picture it makes sense.

A Bad Day

When I’m having a bad day, (for whatever reason), I can wake up feeling nauseated my stomach will be gurgling and food just does not interest me. I will try some breakfast and on a really bad day, I can be rushing to the toilet before I’ve even got halfway through it. The rest of my breakfast is then chucked away. I will try and stomach a cup of tea but again this can have me rushing to the toilet.

Throughout the day, I can feel like I want to throw up, I get all hot and sweaty, palpitations and I can get very light-headed (due to lack of food). There are days I can rush to the toilet 4 to 5 times within a half hour time-frame. This will repeat throughout the day. By the end of the day, I’m exhausted! Not something you want to be doing on a day out!

Triggers

Triggers are what set off an episode of anxiety or IBS flare-up. My biggest trigger is stress! I don’t always know when I’m stressed out, but my body has a great knack for letting me know. Something might happen during the day that I don’t feel is something overly concerning but my body can tell me otherwise.

Food can be a big trigger, certain foods can be a little too spicy which can set my IBS off, some days if I haven’t eaten very much but then have a slightly bigger evening meal, that can set me off. There have been times in the past when I’ve met a friend for lunch, I will have no breakfast as I know we will be having lunch and after a few mouthfuls, I can feel my stomach churning.

This is where the cold sweats and anxiety get to an all-time high, you worry if you have time to make it to the toilet, will you have an accident on the way, how will your friend feel you having to rush off again, will the one and only disabled toilet be in use? It truly never ends.

Flatulance

Farting, a lot of people find this humorous but I can assure you it most certainly is not for someone who suffers from IBS! The pain, the rumbling and grumbling of your stomach, the embarrassment when out and about as flatulence can suddenly come upon you out of nowhere. oh, let’s not forget the most important bit, the bloody smell!

I’m sure we have all been in the situation where you have been in a shop, supermarket etc and you’ve had to let off some wind, normally we can disguise this pretty well but, IBS can cause your wind to be extremely smelly. Just imagine you’re having a lovely lunch with a friend in a cafe, suddenly your stomach growls at you and you know the only way to alleviate the oncoming pain is to let off some wind. Panic sets in, will it smell? Will it be loud? What if it isn’t just wind? All of this while still smiling as if nothing is wrong.

Depression

Woman looking stressed holding hand up to suggest stop

When you have to keep cutting short meetings with friends to rush home because another bout of IBS has made you feel ill, or you simply refuse to go out at all, (which I have done both, many times in the past), or you no longer go out for meals with family/friends because you feel a burden having to leave the table mid-meal to rush off to the toilet. Is it any wonder you start to feel depressed, fed up and isolated?

When I have a really bad week, I simply resign myself to staying indoors and deal with the pain by myself. If I have a medical appointment, I try to re-arrange it where I can.

Recently, I had an opticians appointment. I had no indication I was going to have any issues with IBS so I went to it. After approx 5 minutes into my appointment, I had to rush off to the toilet. The branch didn’t have a disabled toilet, so I had to go out into the high street. At the first coffee shop, their disabled toilet was out of order, this only added to my anxiety. I rushed out of there and went to a second coffee shop. Thankfully I was only just able to use that disabled toilet.

Irony

The irony is, I went down to a set of traffic lights to cross over to go to the first coffee shop. This was where the toilet was out of order. The coffee shop where I was able to use a disabled toilet was back on the other side of the road. This was two doors away from the opticians.

It just goes to show, when you’re in a state of panic and anxiety you really don’t think straight or logically!

If you liked my blog, leave a comment below. If you would like to work with me or anything you would like me to blog about, don’t hesitate to Contact Me.

Disability Blogger and reviewer of products & services - Family room not accessible to disabled families

Hotels Don’t Offer Accessible Family Rooms, Is This Discrimination?

3 Comments / Consumer, Disability, Holiday & Travel Reviews / By Cazbarr / 04/08/2021 01/09/2022

Hotels Don’t Offer Accessible Family Rooms, Is This Discrimination? – Accessible holidays are already far and few between, it’s hard enough to find hotels that are “fully” accessible. Yet, this is made even harder if you have a family. Hotels, for whatever reason, do not offer “family” accessible rooms, yet provide family rooms for able-bodied families. By not offering these room types, disabled people with families are forced to book extra rooms.

The Equality Act 2010 suggests this is direct discrimination. So I’ve contacted 10 of the most popular hotel chains to find out why this is the case. My findings are below.

Family Rooms

As a full-time wheelchair user myself, when booking a room I need a fully accessible room. However, I also have a daughter who travels with us. Finding an accessible room is difficult enough, especially when holiday companies claim to be “fully wheelchair accessible” and then you look at their pictures (when supplied) and find they tell a whole other story. Or worse, you turn up and only find out then. Yes, both have happened to me.

At present, it seems hotels do not offer any “family” accessible rooms for disabled people. Yet they do supply family rooms for able-bodied customers. This is direct discrimination!

I recently visited family in Wales (I’m in London). We booked a room with Premier Inn. As they are one of the hotels that do not offer accessible family rooms, our daughter could not stay in our room. Luckily, we had family members who were visiting with us, therefore, we were able to book a family room for them and have our daughter in with them. This begs, the question, what if my other family members were not travelling with us? What/where would my daughter go?

When you are disabled and have a family, being forced to book an extra room for your children is not only a parent’s worse nightmare but this can make a family hotel room “double” in price. With new Government rules/regulations around school term holidays, can you imagine how much this would cost at peak times? A hotel stay (1 room) can jump from approx £600 to £1200 for a few days stay. I wonder what non-disabled customers would say about this if they had to pay for two rooms as family rooms were not offered? I’m sure they too would have something to say about it!

Contacted Hotels

I contacted the above hotels all on the same date (10/7/21) asking if they do in fact offer accessible family rooms,

My email:

Dear Sir/Madam,

I am contacting you today to enquire about family wheelchair accessible rooms. As a full-time wheelchair user, I find accessible rooms are far and few between as it is but accessible “Family” rooms seem to be non-existent! Why is this?

When booking a hotel room, I am unable to find any accessible family rooms. This means I am forced to book a second room just for my daughter. This then makes my hotel bill double in price. This is not the same for able-bodied customers as hotels seem to offer plenty of “family” rooms that are not classed as “accessible!

This puts disabled people with families at a major disadvantage compared to able-bodied families, both financially and physically.

I am writing to enquire if any of your hotels offer wheelchair-accessible family rooms. If not, do you have any alternatives in place, like offering a second room at a reduced rate or even for free? Do you have other alternatives are in place if not, how do you let your disabled customers know this? If you do not offer wheelchair-accessible family rooms or any alternatives, what is the reason for this?

I look forward to your reply.

Hotel Responses:

Premier Inn – I found Premier Inn to be the most helpful and most willing to help, they say: “We are able to add additional beds into our accessible rooms to make them into family rooms upon guests request. Where this isn’t possible and we aren’t able to accommodate guests in one room we will offer a second room for free and will always try to make this an interconnecting room to the accessible room.”

Since receiving their reply, I have booked a room where they have said an extra bed will be put in their accessible room at the hotel I am staying at. So fingers crossed, all will go well. So far, they have done what they say they would.

Travelodge –

“Thank you for contacting Travelodge.

At Travelodge we take our commitment to equality of access very seriously.

We do give great consideration to the accessibility of our hotels and make every effort to make reasonable and practical adjustments to support the varying needs of our customers.

Having adopted and complied with well recognised national standards we consider that we are meeting our obligations to disabled customers under the Equality Act 2010.

Whilst facilities offered across our locations do vary due to the age and type of construction every consideration is given to accessibility and should you ever want details of the provision at a specific hotel this can be obtained from the hotel itself. For example accessible rooms in our newer properties are equipped with walk in wet room showers.

The Bed base from the ground is 25cm
Bed base and the mattress together is 49cm
The Bed fully made is around 52cm

I hope this helps”.

Best Western – No response!

Ibis Budget/Styles – “Thank you for reaching All Accor Live Limitless Customer Care support. First, I truly apologize for the inconvenience. I am coming back to you following your request regarding wheelchair-accessible family rooms. I am not able to reply directly, so I have allowed myself to forward your email to the ibis Fes hotel which will take care of your demand. They will return to you as soon as possible“. I’m still waiting

Novotel – No response!

Holiday Inn – No response!

Britannia Hotels –

I contacted the hotel directly in wales as I was looking to book here for a few days, (until I read the reviews). This was their reply:

“Thank you for your message.
The Grand Hotel in Llandudno has 2 accessible rooms which have 2 single beds in each room. These rooms have walk in showers with a small step into the cubicle. Unfortunately, we do not have any rooms that have a wet room.
If you would like to book please contact Reservations on 0161 923 0300 and then will be able to give you rates and check availability.

Kind regards“

So this is what they call accessible: These rooms have walk in showers with a small step into the cubicle. Not wheelchair accessible then!! Glad I wasn’t staying here.

Marriott –

They responded with a brush off but at least they responded I suppose:

“Thank you for contacting Marriott Bonvoy™ Customer Care. It is my pleasure to assist you today.
Please accept my apologies for any inconvenience caused and I can certainly understand your frustration.
Please call our reservation line toll free, 24 hours a day at 1-888-236-2427. One of our dedicated associates will be happy to help you with your upcoming travel”.

Hilton Doubletree – No response!

Ramada – “Thank you! We’ve received your message. We will respond within 24 – 72 hours. We are currently experiencing a higher than normal volume, your patience is greatly appreciated.”

I’m still waiting!!

Hotels Don’t Offer Accessible Family Rooms, Is This Discrimination?

Family room not accessible to disabled families

According to the Equality Act 2010, they say this:

Direct discrimination occurs where, because of disability, a person receives worse treatment than someone who does not have a disability. This provision is intended to stop people being denied a service, or receiving a worse service, because of prejudice”.

“What is discrimination arising from disability? (new)

Discrimination arising from disability occurs when a disabled person is treated unfavourably because of something connected with their disability and the unfavourable treatment cannot be justified. Discrimination arising from disability is different from direct discrimination. Direct discrimination occurs when a service provider treats someone less favourably because of the disability itself. In the case of discrimination arising from disability, the question is whether the disabled person has in practice been treated unfavourably because of something connected with their disability”.

So, the question is, are disabled people receiving worse treatment than non-disabled people if hotels are not offering accessible family rooms? If the hotel offers no alternative for a disabled family and they have to book an extra room because of this treatment, then I believe the answer is most definitely has to be a yes! But, if an alternative solution is offered, then direct discrimination has not taken place.

Are disabled families treated unfavourably because of something connected with their disability? I believe yes! Why? Because as a non-disabled person, you have multiple options available when booking a hotel room, single, double, suite & family. Disabled people have one option, Accessible! So when travelling with your family, how do you cater for them if the hotel won’t offer anything more than a standard accessible room?

What reasonable adjustments do you have to make for disabled people? (changed)

Service providers are required to make changes, where needed, to improve service for disabled customers or potential customers. There is a legal requirement to make reasonable changes to the way things are done (such as changing a policy), to the built environment (such as making changes to the structure of a building to improve access) and to provide auxiliary aids and services (such as providing information in an accessible format, an induction loop for customers with hearing aids, special computer software or additional staff support when using a service).

When a hotel refuses to offer an alternative solution, they are in breach of the Equality Act 2010! Simple as that!

Further help

The Equality and Human Rights Commission is the statutory body established to help eliminate discrimination and reduce inequality. It will issue a statutory Code of Practice explaining in more detail the law in relation to service provision and discrimination. It also produces a range of material providing practical guidance on how to comply with the law. www.equalityhumanrights.com 0845 604 6610.

***UPDATE*** Up & Coming Campaign

We (a few disabled people at present) are looking into starting a campaign to get the hospitality industry (particularly hotels/B&B’s etc.) to:

Make “family accessible” rooms available, don’t fob off with “we MAY be able to include an extra bed
If family-accessible rooms are not feasible, then offer 2nd room free
Give correct and factual information regarding accessible rooms – Include images, measurements of room, bed height and wet room
Train staff – Make staff training better, telling a wheelchair user another wheelchair user has used said accessible feature is not helpful or informative

My Facebook group to help bring more awareness to this issue and hopefully get more done: UK Hotels No Accessible Family Rooms | Facebook

Wish to help us with this campaign, please do get in touch.

Related Blogs

So You Advertise As Accessible?

If you liked my blog, feel free to leave a comment below. If you would like to work with me, or if there is anything you would like me to blog about, don’t hesitate to Contact Me.

High street with speech bubbles saying "We're Accessible"

So You Advertise As Accessible?

1 Comment / Disability, Disabled Shopping / By Cazbarr / 02/04/2021 02/09/2022

So, You’re Accessible? – Many companies and retailers advertise as being “Accessible” but what does this actually mean? Does it tell me if you have any steps in and around your premises? No! Does it tell me how high your counters are? No! So the fact you are advertising yourself as “Accessible”, gives me and other disabled people NO information whatsoever! Not only that, but you are probably also in breach of the Equality Act 2010!

Claiming to be Accessible Doesn’t Mean You Are Accessible!

So, You’re Accessible? – As a company or retailer, advertising as being “accessible” and then giving no further information, means you are not being as inclusive as you would like to think! Just because I CAN enter your premises, does NOT make you an accessible company.

Your interpretation of accessibility will most probably be completely different to those of a disabled person! There are many things you need to have in place before you can warrant yourself the title of being an “Accessible” company.

I am a full-time wheelchair user and my accessibility needs would differ from those who say are deaf or blind, I can not climb steps but a deaf person would most likely manage them. My arms are very weak and I can’t raise them up past my midriff, therefore using card machines on a counter is extremely difficult but yet, again a deaf or blind person would most probably find it easier to use.

Being Accessible

So, You're Accessible - Equality Act 2010 & Buildings Regulation compliant Disabled Toilet — Equality Act 2010 & Buildings Regulation compliant Disabled Toilet

Disabled toilets, do you have a unisex one as well as male/female ones? Some disabled people have carers who are of the opposite sex. They would need to use a unisex toilet.

Changing rooms, the above would also apply. The amount of times my husband has been refused to come in a changing room with me is shocking, to say the least.

When shopping for new bras in a very well known high street chain. My husband couldn’t come in with me as it was a female changing room. When asked if there were any unisex changing room, I was told no. I asked where the disabled changing room was, it was in the female changing room section.

When I argued the point that he was my carer and I could not try on the bras without his help and the fact I shouldn’t be expected to have a complete stranger help me with such intimate form of help, especially when they are at fault for not providing a unisex changing room, my husband was eventually allowed in to help me.

The other side of the coin is companies that do have these amenities but then use them for other purposes. I’ve lost count of the number of times I have been to restaurants, clothing shops and found the changing room or disabled toilet being used as a storage room. Using these amenities outside of its intended purpose is again, NOT being inclusive. I STILL can’t use them!! So yes, having these features may make you accessible but you ARE NOT USABLE!!

So What Is Accessible?

When a disabled person wishes to visit your premises, we need to know quite a few things to allow our visit to be as hassle-free as possible. I don’t want to read/hear the words “Yes, we are accessible”, only to turn up and find that actually, you’re not accessible at all. We need to know things like the following (this is only a fraction of the information we may need):

Are you level throughout your premises?
Do you have any steps? If so, how many and how high (most electric wheelchair users can cope with one small step)
Do you have a unisex disabled toilet?
Are your changing rooms unisex? Do you have a disabled changing room?
Restaurants, how high are your tables, I need to know if my knees will go under the table as I am in quite a high wheelchair.
Do you supply large print menus?
Hearing loops?
Height of your customer counters?
Hotels, do you offer wet rooms?
How high is the sink in your wet room?
Does the shower/toilet have grab rails, if so, where are they and are they horizontal/vertical?
Do you have lifts?
Can you supply letters in braille?

Accessibility Fail

When accessibility fails on a mega scale, it is very distressing, soul-destroying and extremely frustrating to say the very least. My husband booked a hotel for a surprise long weekend in Cornwall. He phoned the hotel first to check out its accessibility, they answered all his questions and assured him all would be fine.

We turned up at the hotel only to find a list of accessibility failures:

There was a flight of steps leading up to the entrance. No problem said the hotel, just use the trade entrance round the back!
Our room was upstairs, the lift was a very tight squeeze, if I had my electric chair I have now, I wouldn’t have got in!
A step down the middle of the hallway leading to our room, the step was over 5 inches high
My manual wheelchair would not fit through the bathroom door, again, not a problem said the hotel, we’ll remove the door for you!
The disabled bathroom was NOT a wet room, it had a bath with a glass door across it, I had to get my husband to help me shuffle across the floor from the bathroom door entrance to the toilet so I could use the damn thing!
No room on either side of the bed to park my wheelchair.
The patio doors leading to the garden area had a very high step.
When in the restaurant, hubby had to get my food at the buffet as the room was so small. Hubby would have to go see what was available, come back and tell me, then go back to fetch it!

Not How To Resolve Issues

When things do go wrong and you get a complaint, here is a prime example of how NOT to deal with it!

To add insult to injury, when we complained to the hotel manager, he was rude, and obnoxious and accused us of lying only to get a refund. I told him to check with the staff member who offered to take the bathroom door off for us. He still wasn’t having it.

I told him he could stick his refund, that was not what this was about. The hotel was advertised as being “wheelchair Accessible” when clearly it didn’t even come close.

How To Improve

Make sure you are actually accessible BEFORE advertising as so.
If you are unsure of the accessibility features you should have (some are business dependant), ask!! There are many of us only too happy to advise you on accessibility needs, Some do it as a business!!
Give disabled people more information. Have a section on your website explaining how you are accessible.
If something is out of order, like lifts, let us know!

It really isn’t that difficult to be Equality Act 2010 compliant!!

More Blogs

Hotels Don’t Offer Accessible Family Rooms, Is This Discrimination?

WAV – What Is It And Why has It Improved My Independence?

Wheelchair Life – Ignorance, Personal Space Invasion & Damage!

If you would like to work with me, or if there is anything you would like me to blog about, don’t hesitate to Contact Me.

White outlined wheelchair in shopping mall

Online Christmas Shopping During A Pandemic As A Disabled Person

Leave a Comment / Consumer, Disability / By Cazbarr / 24/12/2020 01/09/2022

Online Christmas Shopping During A Pandemic As A Disabled Person – On the high street as a full-time wheelchair user, shopping is difficult at the best of times. Throw in Christmas and it is a whole new ball game. Being in a pandemic and lockdown leaves me no other choice but to buy online! Do I prefer this to doing my shopping on the high street? What did I find to be the best and worst parts of shopping online for Christmas gifts?

I hate high street shopping at any time of the year. People, access, stupidity all add stress to what should be a normal part of my life! If you are an able-bodied person reading this, how many times in one shopping trip have you NOT been able to gain access to a shop because of steps? How many times have you NOT been able to browse around a shop due to clothes rails being so tightly packed together they hit your shoulder causing severe pain? Gone to a counter to pay and been ignored because the counter is so high you are NOT seen? Exactly!! I can experience each of these EVERY TIME I go shopping.

Benefits of Shopping Online

There are many benefits to shopping online.

It’s stress-free.
You can visit many different websites at the touch of a button.
Browse 1000’s of products in a short space of time.
You are not worrying about the next person bumping into you or clambering over your wheelchair.
Queue jumping because “they didn’t see you there”!
Best of all, left out in the cold because you can’t get into the shop!!

Online shopping gives you the freedom to search for what you want at a time that is right for you. Websites don’t have “opening times” the same as physical shops do! So, if you want to shop for a pair of socks at 2 am, you can!

If like me and you use a PC, then another benefit is you can have several tabs open comparing the same item across different sites to check for delivery time/charges, price of the item and of course returns policy. Can you imagine doing that on the high street, even if you’re not a wheelchair user? I love the fact I can sit at my desk, a cup of tea beside me and settle down to browse gifts for family/friends in the warmth of my own home.

The Downside of Shopping Online

When shopping online, images of products are of course going to be great looking. After all, the company is trying to sell you their product. You only have to read my review of Tapi Carpets to see the issues you can have.

You can’t feel the item – Texture, material
Smell the item – Some fake leather products can smell really bad
Colour is not always the same when viewing on a monitor
Judge sizing when shopping for items such as clothing.
Solitary experience.

I have bought things that look great online but once received, the material is of lesser quality, or the item is smaller, or worse, turns up broken or faulty. I have bought a Christmas present that looked a good size and quality online but having received it, I know it’s going to be a big disappointment to the recipient! No doubt it will have to be returned. Sometimes you just want to see an item in the flesh.

I have done 90% of my Christmas shopping online this year. I’ve used brand company websites, eBay and Amazon. Companies I’ve not been familiar with and I have to say, I’ve only had two incidents. One, where an item arrived broken and another replaced by a lesser quality item than what was advertised. Both of which have been sorted fairly easily.

Security Measures in Place

Online Christmas Shopping During A Pandemic As A Disabled Person - Safety - A as a padlock T as a key

Online Christmas Shopping During A Pandemic As A Disabled Person – Making sure you are aware of the pitfalls of shopping online is paramount! There are many ways things can go horribly wrong.

Identity theft.
Spam emails.
Fake websites.
Fake products.
Cloned bank card – To name a few.

However, research is everything! It is important to gather as much information as possible about the company you are shopping online with. Once you have done these checks a few times, it will become easier to spot a dodgy website/product.

Check websites address for HTTPS – If the company’s web address starts with HTTPS (especially on checkout pages), then you know your information is being sent over a secure network. – What is HTTPS?
Pay with Paypal where possible – If you pay by Paypal, the company you are purchasing from will NOT have any information regarding your card details. Only your name, address, email address and phone number if supplied. The beauty is, you don’t even need to have a Paypal account to do this.
Use a recommended website where possible – It’s always good practice to use website friends and family have used. You will know if they had a good or bad experience.
Check delivery and returns policy – Things can go wrong and for this reason, always check the returns policy and make sure you agree with the company’s terms. You don’t want to get caught out when things are too late.
Can you find the company address? – The Gov.uk website, says the following: Before an order is placed, you must provide: your business name, contact details and address, so it is helpful if you can find this as a lot of companies show pricing in GBP but originate and send products from another country.

Conclusion

If you do your research and check out the website the best you can, you should have a fairly pleasant experience. Yes, things will invariably go wrong, that’s life but you shouldn’t have too much of a problem getting the issue resolved. I will most definitely be doing my Christmas shopping online next year!

May I take this opportunity to wish you all very Merry Christmas and a Happy New Year! Please look after yourself and others. Here’s hoping next year will bring better things to all.

More Info

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Electric Wheelchair Assessment: Being Told What I Do & Don’t Need As I Obviously Don’t Know My Own Disability!

3 Comments / Disability, My Moans / By Cazbarr / 17/11/2020 01/09/2022

Electric Wheelchair Assessment – Being assessed for disability aids is stressful enough, to say the least. When you’re faced with someone who is telling you what you do and don’t need due to your disability. This can be soul-destroying, frustrating, belittling and extremely angering! This was how I was made to feel when I was being assessed for my Electric Wheelchair!

I have been a full-time wheelchair user for over 15 years and I’ve had my disability (Arthrogryposis) since birth. I do believe that makes me an expert on MY disability, not anyone else!

My Assessment

Having had my previous electric chair for over 5 years, I was due to have this replaced. I, therefore, needed an assessment for a new wheelchair. This would be done at my NHS wheelchair service.

At my assessment, I was happily told by my clinician that I would be having the “Invacare Fox” wheelchair! This decision was made without any discussion with me. (This immediately set the tone for this assessment)! How did this decision get made without discussing this with the person who was actually going to use the wheelchair and finding out first, if anything has changed? Is this not the point of an assessment?

My clinician’s attitude was that of excitement as she totally believed The Invacare Fox electric wheelchair was the one for me. She brought the wheelchair out to me and immediately expected me to be as elated as her. Instead, I could tell immediately, this was not the chair for me!

I went with the flow and got into the chair. I told my clinician that the footrest hangers were digging into the side of my knees. Not a problem she said, this can be rectified by adding some padding to the shoulders. I explained this had been done on a previous chair and it only made matters worse. (I still have the indentations in my legs) and I showed her these.

She seemed put out and went on to say we could put cushions down my side. (Between me and the armrest guard). Again, I explained this would not be suitable as I self-transfer in and out of my chair regularly. The cushions would fall to the floor repeatedly and as I can not reach the floor, I would not be able to retrieve them.

Problem After Problem

The issues being presented, included armrests not being height adjustable, to which she claimed having one shoulder higher, will cause problems in the future. (So, the fact I need one arm higher to keep my back straight, to prevent pain is not relevant?) 15 years down the road and I am still not suffering any pain in my shoulder!!

She explained that another type of armrest could be fitted if I really wanted them height adjustable. Errmm I don’t “want” them I told her, I “need” them to be adjustable. I wasn’t willing to accept the chair until she confirmed the armrest could actually come adjustable. Guess what? They didn’t! Thankfully she didn’t mention sticking cushions to the armrests to make them higher!!

The backrest of the chair was tilted backwards and unable to be repositioned. Which meant I would be slightly reclined sitting in the wheelchair. Again, I need to be sitting as upright as possible, to prevent back pain. Clinicians response was to have a different backrest. She attached a different backrest that was one of the options for the chair. This backrest was completely uncomfortable and prevented a full range of movement.

So once again, rather than give in to the fact that this wheelchair was completely unsuitable. She suggested using cushions with the original backrest. She likes these bloody cushions!!

I was getting really fed up now, I told her that I would definitely NOT be having this chair. She banged on about not having any other suitable chairs for me and that budget didn’t allow for anything else. I said she (wheelchair service) had a duty of care to make sure any wheelchair supplied to me fits my needs. This chair didn’t, so she was going to have to sort it out.

Second Assessment

As you can imagine, I was both disappointed and furious leaving my so-called assessment. When I got home, I phoned the wheelchair service to explain what had happened and requested another assessment, only this time with someone different.

Thankfully this is what exactly happened. I had an assessment with a different clinician. A lady I had dealt with many time previously and a sales rep from presumably one of their suppliers.

I was shown one wheelchair, unfortunately, it escapes my memory as to what it was called. This again was not suitable, the footrests were causing issues and no alternative option available for the chair. They then showed me an Invacare Spectra XTR2. When I sat in this, I immediately felt the difference. I was then told this particular chair came with tilt and recline. This would make all the difference for my back. (My Spectra XTR2 Review).

I rode it out to our car in the car park to make sure it would fit, (we had a Vauxhall Astra Sports Tourer at the time) and already had car ramps for my chair I was using at the time. Took a little while but we worked out how the chair would fit in the car. It was agreed that this chair was the most suitable for me and I could expect to receive the chair in a few weeks.

Attitude Is Everything!

Attitude is indeed very important. Here I was, having a supposed assessment for an electric wheelchair and I was told the decision had already been decided (without me) as to what chair I was going to receive!! No wonder I was peed off!!

My clinician came across like she was hell-bent on the fact that the Fox was the right chair for me and took whatever measures necessary to make it work. It didn’t seem to matter to her if this made my life more difficult and/or painful!! Trouble was, her solution was always the same, stuff a cushion there and problem solved.

Unfortunately for her, her attitude regarding the chair and me put me right off from the offset. I knew very early on that this was not the chair for me, so for a quiet life, I switched off and just went through the motions until I knew I couldn’t take anymore and decided to tell her so!

Conclusion

We all know how bad funding is in the NHS but this is NO excuse to decide what life-changing equipment a person is GOING to have BEFORE even discussing it with the client/patient etc.

I’ve had my fair share of sales-people try to force disability products onto me and I have learned the hard way to stick up for myself and this was why I said no to the Fox. I practically demanded another assessment with someone else and If I hadn’t, I may have ended up with a wheelchair that would have caused me no end of trouble and even severe pain in my back. Don’t be afraid to stand up for yourself. It is your health, your body that will be affected if you don’t.

More Info

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Disabled Toilet Blue Badge bay and radar key

Disabled Facilities: Do You Abuse Them? I Bet You Have!

2 Comments / Disability, My Moans / By Cazbarr / 26/08/2020 20/05/2023

Disabled Facilities: Do You Abuse Them? I Bet You Have! – Disabled facilities are there to help disabled people achieve the same daily tasks able-bodied people take for granted. By abusing these facilities, you are preventing us from living our daily life as you expect to live yours…..Without fighting for your basic human rights!!

Disabled Toilets: How Many Times Have You Used One?

My life as a wheelchair user is difficult enough with the barriers I face on a daily basis. Shops I’m unable to enter due to lack of access, card readers too high/too far back to reach when paying for my shopping, people leaning on my wheelchair like I’m some sort of leaning post, derogatory comments etc, the list truly is endless.

Disabled Facilities: Do You Abuse Them? I Bet You Have! - Disabled toilet fitted with handrails, changing table.

So when I need to use the toilet and an able-bodied person walks out of the disabled toilet, I’m angry, why? Well, one of the reasons is I suffer from IBS, it is one of the most unpredictable illnesses I suffer from. The urgency one feels when having an attack is frightening, so when you are made to wait for probably the only disabled toilet available and a non-disabled person walks out, why wouldn’t I be furious?

I have been close more times than I care to mention to having an “accident” because someone’s selfishness has made me wait for a disabled toilet unnecessarily. Who wants that? I certainly don’t, especially when it could have been avoided!

Changing places toilets

Changing places toilets are important to many disabled people as they have a changing table for those that need assistance going to the toilet. This is obviously much more preferable than having to lie down on dirty, wet, urine-stained flooring, which is what has to happen if a changing places toilet is not available or present. You really would be disgusted and angry if it was your child or family member who had to lie on this kind of filthy flooring.

Most standard Men & Ladies toilets have more than one cubicle/urinal for use. To use and take away what is normally the only disabled toilet available is not only selfish but inconsiderate to those of us that have medical reasons for “needing” to use a toilet urgently.

Please in future, be more mindful of which toilet you use.

Disabled Parking Bays: You Will Only Be Two Minutes, So It’s OK!

Disabled Facilities: Do You Abuse Them? I Bet You Have! – I’m fed up with the number of times I’ve been told, “I’ll only be a minute”, “I’m just popping to cash machine, I won’t be long”!! I don’t care how long you will be!!! IT IS ILLEGAL to park in a disabled parking bay without a blue badge. Currently, the average fine for parking illegally in an enforceable disabled person parking bay is £30 which can rise to a maximum of £1000. Personally, I don’t believe that’s much of a deterrent!!

Rule 241 of the Highway Code says:

You MUST NOT park in parking spaces reserved for specific users, such as Blue Badge holders, residents or motorcycles unless entitled to do so. Source: www.gov.uk – Highway Code

Parking in a disabled bay illegally can mean the difference between me completing my task, shopping, Dr’s/hospital appointment, attending a meeting or having to turn around and go back home again. There have been numerous occasions where I have had to go home without being able to do whatever it was I set out to do and that is the key here, not being able to do what I want/need to do!

Your selfishness and inconsideration have a detrimental effect on my daily life, you can not begin to understand the strain my body goes through when I have to get in/out of my wheelchair to get in/out of the car. Not once but 4 times just to do one trip!! It can take up to 2 days for my body to recover, so no, I am not tolerant of your behaviour……Why should I be!!

I wonder how tolerant you would be about these inconsiderate actions if I were the one telling you that “I will only be a minute, just popping to the cash machine”, or “I’m just dropping this letter off”? If this was a daily occurrence in your life, how accepting would you be?

Wheelchair Space on Buses: You Didn’t Fight For Them, Yet Happy to Prevent Those That Did From Using Them!

Disabled Facilities: Do You Abuse Them? I Bet You Have! - Sign explaining wheelchair has priority.

Well, where do I start with this one? Oh yes, disabled people fought and fought for these spaces, year after year, after year until finally, we succeeded. Then, along came buggy pushers and thought it quite acceptable to use these spaces when a wheelchair user needs it, you know, the ones we disabled people fought for! The space has that lovely big blue sticker stating priority wheelchair area. Exactly!!!

Where were all the buggy pushers when we were fighting for this space? Hmmm? exactly! Yet now the hard work has been done and the wheelchair space is now implemented, you are happy to take advantage of the wheelchair space provided for wheelchair users!!

Now don’t get me wrong, I really have NO objection to buggy pushers using this space, IF ONLY YOU WOULD MOVE WHEN NEEDED BY A WHEELCHAIR USER!!!!! The problem is that quite a lot of you buggy pushers REFUSE blankly to move……The signage is very clear in it’s meaning!! You are more than welcome to use the wheelchair space if NOT NEEDED by a wheelchair user. If it is needed, you MUST MOVE. It really isn’t rocket science you know.

It really does infuriate me when this happens as we wheelchair users only have ONE place we can use on a bus, buggy pushers have other options available to them if they so wish. You are basically taking away our right to travel as able-bodied travellers would expect to travel.

Legal Battle

Mr Paulley successfully sued FirstGroup at Leeds County Court for unlawful discrimination against him due to his disability. However, First Group appealed and the case was finally heard by the Supreme Court. On 18 January 2017, it made a landmark ruling that bus companies must end ‘first come, first served’ policies and do more to cater for wheelchair users. Read more: Equality and Human Right Commission

Conclusion

At the end of the day, like it or not, disabled people are not looking for “special treatment/services”, we just want to be able to live our lives as independently as possible and that does mean adjustments need to be made to standardised services.

Simple example. If your vision is not 20/20, what do you do? You visit an optician to get your eyesight tested, yes? If it turns out that you need glasses, you get them. So why should it be any different for someone who’s legs do not work to not be allowed to use an adapted toilet? How would you feel if you were told you couldn’t have/wear the glasses you “needed” to perform your daily tasks???? Think about that one!!

Disabled people are told daily, they can’t have this, can’t use that all because some of you are too selfish and self-important to even try to understand why we “need” these adaptions.

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Brain Fog: A Heart Attack Side Effect

Leave a Comment / Disability / By Cazbarr / 22/08/2020 01/09/2022

Brain Fog: A Heart Attack Side Effect – Brain fog can be caused by many many different medical conditions, mine was due to my heart attack a couple of years ago. Brain fog is much more debilitating than most people realise. When brain fog strikes, a person can have trouble remembering things and processing information. They might also find it difficult to concentrate and pay attention, or that their thoughts are disorganised. This describes my brain fog down to a tee!

What is Brain Fog?

According to Healthline.com they say:

“Brain fog isn’t a medical condition itself, but rather a symptom of other medical conditions. It’s a type of cognitive dysfunction involving:

Memory problems
Lack of mental clarity
Poor concentration
Inability to focus

Brain Fog: A Heart Attack Side Effect - Brain with an out of order sign

Some people also describe it as mental fatigue. Depending on the severity of brain fog, it can interfere with work or school. But it doesn’t have to be a permanent fixture in your life”.

For me, brain fog affects me in many different ways. I have days where amazing words just fly out of my mouth, like today, when discussing this blog with hubby I was explaining how some days I can’t remember the name of the “item” pen, or simple everyday words and the next, I can come out with words like I’m some sort of professor! (Beleive it or not, I was going to use the words I used while talking with hubby but because I took a break for 5 mins, I’ve no recollection of what the word was, that I used)…..Extremely frustrating!

I think what frustrates me the most is when I get interrupted for whatever reason, and my train of thought is completely destroyed. I really do have to sit and seriously think as to what I was previously thinking of and try and get my thinking process back on track. (That’s why it seems to take me forever to get a blog finished), I live in a madhouse with two kids (albeit practically grown-up) a husband who thinks he’s a child and a 2-year old Beagle dog. When on earth do I get time to myself to just write?

What Are The Causes of Brain Fog?

Websites that talk of brain fog mention the following as causes for brain fog:

Stress
Lack of sleep
Hormonal changes
Diet
Medications
Medical conditions

The full description can be found on Healthline.com

I know for me personally, lack of sleep is my worst nightmare (pardon the pun). If I haven’t got enough sleep, my brain fog is at an all-time high and this doubled with me being grumpy due to lack of sleep, is not a good combination. My family have come to realise the best thing to do is give me a wide berth.

There are days I wake up more tired than I was before going to bed. My head feels like it’s filled with cotton wool and trying to take in conversations or simple instructions can seem like I’m trying to learn quantum physics. I get so frustrated and even angry at myself on these days as I used to be so good at both of these and more.

Having a physical disability, words became my friend so to speak. Always a smart, funny answer to most things. I felt I was pretty good at tackling most things (written form). The flip side from this though is since my heart attack, my tolerance level for BS has become practically 0…..So, when I need to write important letters for whatever reason, I seem to be able to get straight to the point, no waffling as I used to do. Strange!

Brain Fog: A Heart Attack Side Effect - No smoking sign

Stress and being a smoker is what caused the onset of my heart attack. I was fighting two companies at the time, one (my housing association re my through floor lift), the other, an insurance claim due to a relatives caravan catching fire. Not a great time!

Stress is a nasty entity and is very much underrated as the cause of a lot of medical issues. The trouble is, how do you combat stress? Unless you lock yourself away from the world, it is near impossible but that is for another blog (maybe).

How Is Brain Fog Diagnosed?

See your doctor if you have persistent lack of clarity that worsens or doesn’t improve. A single test can’t diagnose brain fog. Brain fog may signal an underlying issue, so your doctor will conduct a physical examination and ask about your:

Mental health
Diet
Level of physical activity
Current medications or supplements

You should let your doctor know about other symptoms you might have. For example, someone with hypothyroidism may have brain fog along with hair loss, dry skin, weight gain, or brittle nails.

Blood work can help your doctor identify the cause of brain fog. A blood test can detect the following:

Abnormal glucose levels
Poor liver, kidney, and thyroid function
Nutritional deficiencies
Infections
Inflammatory diseases

Based on the results, your doctor will determine whether to investigate further. Other diagnostic tools may include imaging tests to look inside the body, such as X-rays, MRI, or CT scans. The doctor may also conduct allergy testing or a sleep study to check for a sleep disorder.

Keeping a food journal can help you determine if your diet contributes to brain fog.

While in hospital recovering from my HA I was told I could now suffer from brain fog (as this is a side effect) and it may be permanent or it may not……That was it! No follow up or proper diagnosis.

I have been to my GP regarding my symptoms but I’m just made feel that I’m blowing it all out of proportion or it’s just all in my head. So I have given up now.

How To Treat It

Brain fog treatment depends on the cause.

For example, if you’re anaemic, iron supplements may increase your production of red blood cells and reduce your brain fog. If you’re diagnosed with an autoimmune disease, your doctor may recommend a corticosteroid or other medication to reduce inflammation or suppress the immune system.

Sometimes, relieving brain fog is a matter of correcting a nutritional deficiency, switching medications, or improving the quality of your sleep.

Home remedies to improve brain fog include:

Sleeping 8 to 9 hours per night
Managing stress by knowing your limitations and avoiding excessive alcohol and caffeine
Exercising
Strengthening your brainpower (try volunteering or solving brain puzzles)
Finding enjoyable activities
Increasing your intake of protein, fruits, vegetables, and healthy fats

Hmmm, not sure I agree with a lot of these.

Sleeping 8 to 9 hours per night – I do, do this and still feel as tired as I did going to bed, some days more so.

Brain Fog: A Heart Attack Side Effect - Head showing brain illustration with listed effects of brain fog

Managing stress by knowing your limitations and avoiding excessive alcohol and caffeine – Seriously, how can one do this, life is full of stresses, especially someone with a disability. This gives a whole new level of stresses!

Exercising – Hmm, as a wheelchair user with weak arms, hands and legs, not an easy task by any means. Hubby got the Oculus Quest VR headset recently, I played Beat Saber for 3 songs and I couldn’t use my arms for 2 days after. Seriously, my arms felt lead weights and I couldn’t raise my arms to drink or eat. I have the same issue if I type for too long, my arms become tired and weak!

Strengthening your brainpower (try volunteering or solving brain puzzles) – I build websites, I blog, I volunteer, I play scrabble, chess and I’m learning how to do 3D modelling. I think I’m taxing my brain quite enough thanks. Does it help? I really don’t know, I would need to cease doing all of these for a few months to know for certain. Sorry, not prepared to do that.

Finding enjoyable activities – Think I just covered that 🙂

Increasing your intake of protein, fruits, vegetables, and healthy fats – Trying to improve since my HA.

Source of information: Healthline.com

Conclusion

Like most illness, I have good days and I have bad days. The good days are still bad days as I am never free of my brain fog. I suffer from it on a daily basis. Just the severity is different from day-to-day. My real bad days, I don’t speak to a sole as I am terrified I will make a big mistake, or sign up to something I shouldn’t have, or generally make bad decisions. If I do need to make a decision about something, I run it all past my hubby first. This terrifies me as I was always someone with good common-sense and a sensible head on my shoulders. (I feel like I can’t trust my own judgement).

If I get a phone call on a bad day, well actually, any day, I put it on loudspeaker so hubby can hear it too, this way, if I forget something important, hopefully, he can help me. I’m often making notes on a phone call to help with this.

After my HA, I felt very badly let down by the medical profession as a whole. My GP always seemed to make me feel I was burdening them with trivial stuff and why was I wasting their time. I suffered (and probably still do) with depression and my anxiety has worsened to no end. My GP just handed me some leaflets and basically told to get on with it.

The other problem is that this is a hidden disability and believe me, disability it is! (No-one knows you have brain fog unless you tell them). It is difficult when out and about and you’re trying to remember what you went into a shop for, or you can’t remember where you put your bank card or loyalty card when at the till. It can be rather embarrassing to say the least.

My best mate suffers from brain fog too. We both end up giggling over the words we fail to remember or stop mid-sentence cos we can’t remember what we were going to say. It’s nice I can feel comfortable with someone who fully understands my daily struggles.

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Non-disabled person standing between two wheelchair users asking "what's wrong with you?"

When I’m Asked What’s Wrong With You?: Should I Take Offence?

Leave a Comment / Disability / By Cazbarr / 02/08/2020 08/10/2022

When I’m Asked What’s Wrong With You?: Should I Take Offence? – As a disabled person myself and a full-time wheelchair user, I am often asked by complete strangers, “what is wrong with you?”. Some people take great offence at this, yet these same people bang on about how ignorant ableds are! Can ableds win?

What’s Wrong With You?

I was on holiday last year and I experienced good and bad attitudes from non-disabled people.

The good side (in my opinion): It was at the end of a wonderful ’80s themed night aboard a ship I was cruising on with my family (read my review). We were finishing our drinks after dancing the night away to all the popular 80’s music when the lady sat at the next table asked me “do you mind me asking what is wrong with you?”. I replied, “no, of course not”. I genuinely didn’t mind.

I went on to explain how I was born with my disability Arthrogryposis, how this affects my daily life and how my husband is my carer etc. etc. She seemed genuinely interested and even asked more questions when she didn’t understand something. She was amazed when I spoke of the barriers disabled people face on a daily basis by society/buildings etc. I explained this was why I loved cruising, as it was one of the more accessible holidays available to me. She couldn’t understand why access wasn’t better.

I spoke for quite a while, not realising how passionate I had become explaining why I do the things I do and how my disability affects my outlook on life. So I wrapped things up and said goodnight.

The bad side: (again on our cruise, we (my family) had a great but tiring day at port this particular day. I was making my way back to my cabin and while in the lift alone, this lady got on at another floor and immediately starting complaining to me how sore her feet were and how she had walked and walked and walked the whole day. How she couldn’t wait to take her shoes off and rest her poor feet. Now maybe it was because I was tired but all I wanted to shout at her was “at least you bloody well have legs that you can use to walk and walk and walk!”.

Should I Get Offended?

Should I get offended? I suppose this question can’t really be answered with a simple yes or no. It boils down to the individual’s perception of they deem to be offensive, the same way as asking “did you find that joke funny?”. Each person has their own idea of what is funny, the same way as each individual find some things offensive while others do not. Me personally, I’m not offended if someone genuinely wants to know. But that’s the key for me if the person asking is genuine!

Offend: To irritate, annoy, or anger; – Cause resentful displeasure in: – To affect (the sense, taste, etc.) disagreeably. – To hurt or cause pain to.

I kinda get it when disabled people say how rude and personal this is but, in all fairness, you can decide how personal your answer will be…..Can you not? I can’t help but feel that some disabled people want their cake and eat it. Some go on and on about how ableds are so uneducated and ignorant towards disability, yet when they take the time to ask you about it, you go all offended and say how rude of them?

When I'm Asked What's Wrong With You?: Should I Take Offence? - Red no entry sign over a blue shaped wheelchair user

I love someone wanting to take time out of their day, holiday, shopping or whatever to ask me about my disability. I hope that I am contributing to helping people better understand disability (well mine anyway), so they may pass this on or prevent discrimination in the future.

Of course, I think it’s fairly easy to know if someone is being false or malicious in their questioning and yes, I totally agree they should not be entertained!

Disability Assumptions

One of the things I do get offended by is the fact my husband wears an artificial left leg and normally the first thing strangers assume is that he has been in the forces and lost his leg. They seem to forget that he may have been born with a disability. I mean, there is no other way to have an artificial limb, is there!!

The other is that I have polio. When I used to walk with my calipers, 90% of people (especially minicab drivers) always assumed I had polio. (Not sure if this was anything to do with a common charity box outside a lot of shops back then that was a young boy wearing one calliper on his leg). I would then have to correct them and explain what Arthrogryposis was 🙂

To me, assumptions are more offensive than just asking me “what’s wrong with you”. I am always happy to take the time to talk to anyone wishing to be educated.

Conclusion

If you want to know about my disability, I will always do my best to explain it to you, provided you are genuinely interested. I understand how difficult and uncomfortable it might be for some, to talk to disabled people. People are only human at the end of the day and are scared of “different”.

I saw a video some time ago where a wheelchair user (male) sat in a very popular area (can’t remember where now), sat with a cardboard sign saying people could ask him anything about his disability. I have often thought of doing this myself. I am intrigued as to what people would ask me.

In my opinion, disabled people who complain and give out about how rude ableds are for wanting to know about their disability don’t have the right to complain and moan about the same ableds of being ignorant or uneducated!

If you liked my blog, why not sign up to my Newsletter so you never miss a beat, or leave a comment below. If there is anything you would like me to blog about, don’t hesitate to Contact Me.

Cazbarr dressed in leather jeggings and jade sparkly top

Being Disabled: Should It Mean I Can’t dress nicely?

Leave a Comment / Consumer, Disability / By Cazbarr / 30/07/2020 02/09/2022

Being Disabled: Should It Mean I Can’t dress nicely? I take a look at high street clothing and adaptive clothing to see how easy it is to dress nicely as a disabled person who is also a wheelchair user.

Dressing Nicely

Finding clothes that sit right AND look nice on a person who is always in a sitting position is not an easy task. When I go out, I want to look my best. It makes me feel happy and I feel much more confident.

I enjoy coordinating my clothes, shoes and make-up. I have different styles of clothing depending on the situation I am going out for. Rock chic look for karaoke nights down the pub, jacket & trousers for when I meet with shop managers and casual for meeting up with friends.

Being Disabled: Should It Mean I Can't dress nicely? Woman sitting on the floor posing for a fashion shot

Fashion, unfortunately, is not geared for people in wheelchairs or disabled people in general. For example, models are 90% of the time in a standing position when being photographed for magazines/websites etc. If they do happen to be in a sitting position, it’s not a natural sitting position a wheelchair user would be sitting in.

Heels of any height is a no-no for me, as transferring in/out of my chair becomes impossible, I have to stick with flat shoes (ballerina type) which can leave a lot to be desired when it comes to style/design.

I have seen some lovely dresses hanging on the rail in clothes shops but as soon as I try it on, (oh, don’t get me started on dressing/fitting rooms in these shops) it is dreadful. It all bunches up on my lap, making the dress look far too long for me and looking like it could do with a good iron. So I now know it is pretty worthless even looking at dresses when out clothes shopping.

It has taken me many years to know what will suit me as a wheelchair user. Not only because I sit down all day but because of my body shape too. It’s still not an exact science but the majority of the time I can pick up an item, look at it and know if it’s for me. Well, I say that but I still have to fit them on as sizing greatly differs from shop to shop.

High Street v Adaptive Clothing for Disabled People

Adaptive clothing, I have to admit, is not something I ever think about. I suppose this may have something to do with the fact it’s not widely advertised, therefore, when doing a clothing search online, I can honestly say, I have never seen anything to do with adaptive clothing appear in my results. I have to tell my search engine I am searching for “Adaptive Clothing” before anything will appear.

Like everything else that is sold to make “disabled people’s lives better/easier”, it can come at a very high price:

Red linen wrap skirt with velcro fastening.

This is a wrap-around red skirt, it has two pockets and is fastened with a velcro strip on the waistband. I see a couple of issues with this skirt:

How strong is the velcro? Will it come undone with manoeuvring, transferring out of my chair?
Anyone half decent with a needle could attach a piece of velcro themselves.
HOW MUCH?? £52.50…….You are having a laugh!!

There is no way, under any circumstances would I pay £52 for a skirt, no way!!

By comparison, this skirt is also a wrap-around style…..Cost? £9.00 (was £12.99). Even at full price, it’s much more affordable. At the full price, you are making a saving of £39.51, not something to be snubbed at.

The item description says: “Calf-length skirt in a softly draping viscose weave. High waist with concealed press-studs and ties at one side, a wrapover front and asymmetric hem. Unlined”. A little needlework and a piece of velcro could be put in place of press stud.

Ok, how is this item any different to a pair of leggings??? They say ” Fully elasticated waistband for ease of dressing”. Errm, so are all the trousers I possess that I have bought from high street retailers! Again, how are these “Adaptive”?? And you want £40 quid……No!

At the end of the day, you can wheel into any high street clothing retailer and find an identical designed item for a much cheaper price!

So, by comparison, these next two items are what I would agree are in fact “Adaptive” pieces of clothing:

Black and grey coloured tie dye leggings

These leggings may not be floral but no different from the pair above: “Made from a stretch jersey fabric for comfortable wear, they feature an elasticated waistband and finish with a tie dye print”.

The price of these are again much more affordable: £14.99

I know which pair I would purchase.

Adaptive navy jacket made for wheelchair users

Now this is what I would believe to be an adaptive jacket, they say:

“This very comfortable Wheelchair Jacket has been specifically designed for wheelchair users. The front of the jacket has a shorter cut to prevent it bunching up and to keep it looking stylish at all times. Similarly, the arms of the jacket are reinforced on the insides for extra strength and durability, ensuring that the Wheelchair Jacket is strong enough to cope with all the usual scuffs and abrasions that occur when self-propelling without any loss of performance”.

So the problem I mentioned about dresses bunching up at the front has been catered for and I know how sleeves can get damaged very quickly while self-propelling in a manual wheelchair.

Look at that, a reasonable price too: £16.48 Just goes to show, adaptive does not have to mean expensive!

This is a polo shirt that the wearer can put on like a back to front jacket. Or at least that’s what I think they mean.

The description says: “Full back overlap with snaps at shoulders. This adaptive polo shirt for men completely opens up, allowing the individuals arms to be slid into the garment sleeves without ever having to raise/lower their arms or struggle with small neck openings. The back overlap is then folded over and domed/snapped into place”.

I’m extremely disappointed that this company shows no images of how the “Adaptive” part works. Just looks like an ordinary polo shirt as it stands.

Domed/snapped?? Not sure what that means. But at the price of £76.92, I really couldn’t care less as again this is just legalised robbery!!

Red suede ankle boot with fleece lining and lace fastening.

I have saved the most expensive for last…..Cosyfeet pair of boots: A website: Adaptaware, directs you to Cosyfeet when looking on their site for footwear.

As I mentioned before, my feet are odd sized and shaped, therefore I normally need to buy 2 pairs of shoes to accommodate this. But bugger if I would purchase 2 pairs of these.

Ironically, if they were more reasonably priced, I would have bought a pair, I like the style of them. Unfortunately, at the wonderful price of £112.00 – £93.33 without VAT I would not even consider purchasing a pair.

Would this be classed as a VAT relief disability aid? Hmm not sure myself!

100% waterproof to keep feet dry in all weathers
Breathable and with climate control to keep feet comfy and fresh
Windproof to keep feet warm and comfy
Water-resistant lace adjusts to fit a range of swelling
Roomier than it looks due to hidden-depth design
Seam-free toe area is ideal for problem toes
Lightweight sole is durable, shock-absorbing and cleated for good grip
Deep collar offers additional stability around the ankle
Comfort footbed is removable for extra depth – ideal for orthotics

The description is still leaving me with the question of how are these “adaptive”? Hang on…….Seam-free toe area? Is it just me, or does it look like the seam goes right over the toe area?. Climate control?? Are you for real? Where’s the temp knob? Hidden depth design…..Oh, this must be like the “luggage” in Terry Pratchett books.

Conclusion

It would seem that some items described as “Adaptive” are truly adaptive and would benefit many disabled people but…As with all aspects of life, it would also seem that some companies are trying to “cash in” on the £259 Billion spending power of disabled people by advertising some of their products as “Adaptive” when clearly it is no more adaptive than I am Lady Ga Ga!!

The prices of the majority of these products are purely legalised robbery! Do these adaptive clothing really cost this much to make? I doubt it very much. Disabled people have much more to pay out for in comparison to ableds, yet still, companies who advertise to help make disabled’s lives easier, do this by fleecing us! In turn, making our financial lives much harder to impossible!!

Some of these products can be bought from many high street shops and with a little alteration, can be “Adaptive”. Yes, I’m aware not all people can do this (physically) I for one. The question is, would it be cheaper to purchase high street product and pay someone to make alterations, or purchase the “Adaptive” product??

As a disabled person, of course, I would love my daily life to be easier but I’m just not willing to pay the kind of prices that are being asked from some, of these adaptive clothing. Shoes are my nemesis, I have one foot that swells up much more than the other. Depending on style/sizing, I have to buy two pairs of shoes so I can have one of the shoes in the next size up needed for me to wear them. Boots? Well, I’ve given up trying to find a nice pair of those for wintertime. I really like the boots above but will not pay that price.

If you liked my blog, why not sign up to my Newsletter so you never miss a beat, or leave a comment below. If there is anything you would like me to blog about, don’t hesitate to Contact Me.

Prices/information were correct at the time this blog went live. (I have no affiliation with any third parties I may have linked to.)

White circle of petals next to the word Motability on a blue background

Disabled People: Brand New Car Every Three Years!

1 Comment / Consumer, Disability, Disabled Shopping / By Cazbarr / 17/07/2020 02/09/2022

Disabled people: Brand New Car Every Three Years! The biggest misconception is that disabled people get a brand new car for free. Not true! The Motability Scheme helps disabled people in receipt of the higher rate mobility allowance by exchanging this allowance to lease a new affordable car, Wheelchair Accessible Vehicle, scooter or powered wheelchair.

Motability

In a nutshell, anyone in receipt of the higher rate mobility allowance (such as the Enhanced Rate of the Mobility Component of Personal Independence Payment or the Higher Rate Mobility Component of Disability Living Allowance) can use their mobility allowance to lease a car, scooter, powered wheelchair or Wheelchair Accessible Vehicle from Motability. The lease is normally for three years and five years for a WAV (Wheelchair Accessible Vehicle).

Motability’s standard lease takes care of running costs such as insurance for up to three named drivers (this doesn’t have to be you), servicing, maintenance, breakdown cover and tyre and windscreen repair and replacement. All you need to do is add fuel and go.

Misconception

I’ve had it said to me many many times that it must be so good getting a brand new car every couple of years for free! Yeah, I suppose it would be great but this is just not the case. The look on those people’s faces when I explain that’s not the case and I actually pay for my car on a monthly basis is a cross between shock and disbelief.

The look on those people’s faces when I explain that’s not the case and I actually pay for my car on a monthly basis is a cross between shock and disbelief.

I give up the higher rate of my mobility component so I may have a car to allow me my independence, rather than having to depend on other people to get my medication, shopping etc. When my son was school age, I was able to take him and pick him up from school. This was paramount to me as he was being bullied at school and suffered terrible anxiety.

Wheelchair Accessible Vehicle

I became a full-time wheelchair user many years ago, not being able to put my own electric wheelchair in our car and drive off somewhere, means I can longer go out on my own. Therefore I am now in the process of applying for WAV (I will write about my experience, once I have received my car).

Further Information

For a full breakdown of who is eligible, how to apply and more help, check out Motability’s website.

If you want me to blog about a specific subject, or just to say hi, please don’t hesitate to Contact Me.

Group of wheelchair users chatting. Wheelchair service user group text above

Queen Mary’s Wheelchair Service User Group

Leave a Comment / Disability / By Cazbarr / 21/03/2020 02/09/2022

Wheelchair Service User Group – The Wheelchair Service at Queen Mary’s Hospital, Roehampton have meetings quarterly for their users of the service to help shape how the service is provided. If you are a client of the W.S and would like to be a part of this group, all you have to do is contact me on my Contact Page. The Wheelchair Service is based at Queen Mary’s Hospital and is for people registered with GPs in Wandsworth, Richmond, Kingston, Spelthorne, Merton and Sutton.

Wheelchair Service User Group poster advertising the group meetings and contact details

If you have a GP in the boroughs mentioned above and would like to become a client of this Wheelchair Service, please visit their website for more information: Wheelchair Service website.

The service provides wheelchairs, buggies, pressure distributing cushions and associated special seating for people of all ages with a permanent disability affecting their ability to walk. It is an ‘open access’ service and registered clients can contact therapists for information and advice as necessary. The Wheelchair Service based at Queen Mary’s Hospital is for people registered with GPs in Wandsworth, Richmond, Kingston, Spelthorne, Merton and Sutton.

Drop me a line to find out more. Contact Page

Wheelchair user travels on a train for 1st time!!

Leave a Comment / Disability, Holiday & Travel Reviews / By Cazbarr / 17/03/2020 02/09/2022

Wheelchair user travels on a train for 1st time – I travelled on a train but will I do it again!! – I have been a full-time wheelchair user for over 15 years and I have NEVER travelled on a train…..Why? Fear!! Fear of being crushed, fear of being trapped in the doors, fear of my wheels getting trapped in the gap, my list of fears were endless! That was until 2 days ago when I faced my fears and went riding on the trains with a lovely man called Alan (@AlansTweets).

I met Alan at Twickenham station, where we were to start our journey. I arrived early so I could take a look around inside, to familiarise myself. Not much to see really, just a few ticket machines and a ticket office, which was closed.

We took the lift down to the platform and asked a member of staff if we could have the ramp for the next train heading to Clapham Junction on the SWR (South Western Railways) line. Not a problem, the train arrived and we got on using the ramp without any incident whatsoever. I have to say, I was extremely surprised as to how much room was available for wheelchair users, both Alan and I (both wheelchair users) had more than enough room to park our chairs.

Wheelchair user travels on a train for 1st time!! - Alan and myself sat in our wheelchairs in the disabled spaces on the train.

During our journey, Alan spoke about his experiences and the pitfalls that can happen. He said, “The key is to stay calm and be polite but firm when dealing with mishaps”. Very good advise indeed! After all, you can’t expect to travel problem free ALL the time, thing are going to go wrong, that’s called life! But, if they do go wrong, just stay calm and deal with it the best you can.

Wheelchair user travels on a train for 1st time!! - Cazbarr sat on the platform in front of a parked train.

We arrived at Clapham Junction where we jumped onto the Underground. Now I hope I have our journey correct below, it was hard taking in all this wonderful new information at once. I was like a big kid taking in all the new sights/sounds etc around me. But I think our journey went something like this:

Twickenham > Clapham Junction – SWR
Underground – Clapham Junction > Waterloo
Underground – Waterloo > Westminister – We popped out to take a look at Big Ben
Underground – Westminister > Victoria
Victoria > Twickenham – SWR

I tried my best to remember everywhere we had been, take in the sights AND remember where & how I would travel in the future and ask for assistance.

I have to say I was not looking forward to travelling on the underground, this was my biggest fear. Crowds, pushing/shoving all the things we all know about the underground. But I have to say, (ok it was approx 2:30 pm) but the underground was pleasantly not as busy as I had expected it to be. Don’t think I would ever attempt to travel in rush hour.

Wheelchair user travels on a train for 1st time!! - Big Ben clock with scaffolding

We arrived at Westminister as I asked if it would be possible to see Big Ben. We went outside the station and low and behold, what was staring me in the face? Big Ben haha, I never realised it sat right outside the station. So, we didn’t have far to go.

My only memories of train travel/underground, was as a child when my Mum would take me to Great Ormand Street hospital and we would have to use those big, rusty, caged lifts where the doors had to be slammed shut and then the big iron gate door had to be slid across. Scary days really (for a toddler). My one attempt at train travel as a late teenager is not one I am going to go into but be assured it probably was the reason I never attempted it again until now!

We then travelled back to Victoria to get on SWR back to Twickenham. Again, no problems at all……..Until we reached Twickenham and no-one turned up with the ramp! I pressed the red button so someone would be alerted to our dilemma. We spoke with whom I believe was a guard, explained our situation and then this announcement came over the train: Link is to a video Alan made of our journey, this is the announcement: https://twitter.com/i/status/1238576905135296514

Well, you can imagine how upset we both were over this. I think Alan was going to email about this. It was unfortunate that this had to be the one lip in our whole journey. Everything went lovely and smooth without any problems and then that happened!!

Will I do it again? Damn right I will. I can’t thank Alan and wife enough for taking time out of their busy schedule to take me on the train and show me how easy it can actually be…..Thank you to both of you.

Any questions, why not drop me a line using my Contact Page.

Hands holding a piece of paper with VAT at the top and coins and paper money in the background

Are You VAT Exempt?

Leave a Comment / Consumer, Disability / By Cazbarr / 05/10/2019 02/09/2022

Are You VAT Exempt? Did you know, as a disabled person, you may be exempt from having to pay VAT on certain items?? Neither did I!! According to Gov.uk website: If you’re disabled you’ll generally have to pay VAT on the things you buy, but VAT relief is available on a limited range of goods and services for disabled people. VAT relief may be available if you’re buying goods because of your disability. Source: Gov.uk

You’ll only be able to have eligible goods VAT-free if you’re chronically sick or disabled and the goods are for your personal or domestic use. You do not need to be registered disabled or eligible for any other benefit to qualify for VAT-free goods.

Goods you can buy VAT-free

This section has information on the goods you can buy VAT-free because of your disability including:

medical and surgical appliances
invalid wheelchairs and mobility scooters
equipment to aid the hard of hearing, and low vision aids
specialist beds, chair and stairlifts, rise and recline chairs and other lifting equipment and sanitary devices
goods that have been designed solely for disabled people
computer equipment
emergency alarm call systems
boats
parts and accessories

You can hire or lease eligible goods VAT-free if you’re disabled. Your retailer or other supplier is responsible for checking if the goods are eligible to sell VAT-free.

Medical and surgical appliances

You’ll not have to pay VAT when you buy medical or surgical appliances that are designed solely for the relief of a severe abnormality or severe injury such as amputation, rheumatoid arthritis, learning difficulties or blindness.

Appliances that can be bought VAT-free include:

invalid wheelchairs
certain types of mobility scooters
leg braces
neck collars
oxygen concentrators
specialist clothing
specialist footwear
wigs

Items that you cannot buy VAT-free include bandages, plasters or other wound dressings and dentures (unless you buy them from a dentist or other dental care professional).

For full information, please visit: www.gov.uk

If you liked my blog, leave a comment below. If you would like to work with me, or if there is anything you would like me to blog about, don’t hesitate to Contact Me.

Wheelchair Space on Buses – Row Continues!

Leave a Comment / Disability / By Cazbarr / 14/05/2019 02/09/2022

Even after a landmark court case win, disabled people are seemingly still fighting for the wheelchair space WE fought to have implemented on buses!!

Quote: In February 2012, Doug Paulley, a wheelchair user, tried to board a FirstGroup bus from Wetherby to Leeds. The wheelchair space was being used by a mother with a pushchair and a sleeping child. She refused the driver’s request to move or fold the pushchair and so the driver told Mr Paulley he could not board the bus.

Mr Paulley successfully sued FirstGroup at Leeds County Court for unlawful discrimination against him due to his disability, but this was later overturned on appeal. The case was then heard by the Supreme Court, which has given its final verdict today. The Commission has supported Mr Paulley at the Court of Appeal, and at the Supreme Court.

David Isaac added:

“Public transport is essential for disabled people to live independently, yet bus companies have not made it easy for this to happen. This is a victory for disabled people’s rights. The success of this case means bus companies will have to end ‘first come, first served’ polices, increasing peace of mind for disabled people.

“This has been about correcting a confusing policy which has caused untold problems for disabled people.

“For years, wheelchair users have been deterred from using vital public transport links because they could not be sure they will be able to get on. Today’s judgment will make that easier.” – Source: EHRC – David Isaac said Today’s judgment will make that easier……How? The law is still not specific enough about the wheelchair space! It should be made a law that buggies can use the space but when needed by a wheelchair user, they MUST move or fold down their buggy and if they refuse, they vacate the bus and wait for the next one. I mean, parents don’t mind that happening to us at present, so I say equality is the way the go!! Let them know what it’s like to sit in the pouring rain on a freezing cold winters day being refused access to bus after bus because parents don’t want to move their buggies. Now before I’m lynched, I know full well that there are many parents only too happy to move, I thank each and every one of you for this. It is the ignorant, self-important ones I’m on about. They just turn their heads and completely ignore everyone!!

The signs on the bus say:
“Priority wheelchair area – This space is reserved for a wheelchair – The wheelchair must be placed facing forwards resting against the support or backrest with the brakes on. – Please give up this space for a wheelchair user.

Baby Buggies – Buggies can use this area if it is not needed by a wheelchair user – Please move out of the wheelchair priority area if necessary. – Buggies may need to be folded a busy times.

Wheelchair Space on Buses - Row Continues! Sign on buses stating wheelchair takes priority!

So what part of PRIORITY WHEELCHAIR AREA – This space is RESERVED – Please give up this space for a wheelchair user. – Buggies can use this area IF IT IS NOT needed by a wheelchair user are people not understanding?? The sign seems very cut and dry to me!!

If you went to a restaurant and sat at a table marked “Reserved”, you would be moved by a member of staff, yes? So why can’t bus drivers/companies make buggies move from this “Reserved” area?? It really isn’t rocket science!!

TFL say: Buggy users and other passengers may use the wheelchair space, however, if a wheelchair user wants to board the bus, other passengers and buggy users will be asked to vacate the space or fold their buggies.

On many buses, the space is big enough for the wheelchair and buggy to share, but the wheelchair user does take priority and must be correctly positioned in order to travel safely. In some circumstances buggy users may be asked to fold their buggies and wherever possible fold their pram.

Yeah right!!!

Black wheelchair with a red colour frame

I Fake my Disability??

Leave a Comment / Disability / By Cazbarr / 23/03/2019 02/09/2022

There is a culture in today’s world that the majority of disabled people are faking it! Contrary to belief and we know who started the rumour, (yes the government, so they can condone their actions regarding austerity, ATOS, PIP assessments, UC etc all of which were designed to fail, except austerity of course). Fakers are few and far between! Disabled parking bay abusers are a much more common daily occurrence but that doesn’t cost the government money, so of no interest to change or enforce.

The media have contributed to this culture by seemingly creating two types of disabled people: inspirational/sporting “look what they can do”, or lying scroungers. So if I can’t partake in sport/Olympics and represent my country, I must be a faker? This is the problem! What people are forgetting is that our Olympians are sponsored by many different companies, their equipment, (wheelchairs, artificial limbs etc) cost thousands and thousands of pounds to help them achieve their goals. This IS why they can do what they do, plus the years and years of training they do!! If you are Joe Bloggs, believe me, you are given what you’re given and made feel you should be grateful for that much. My husband who was also born with his disability wears an artificial leg, he went to his GP to ask him to sign the form necessary to apply for a freedom pass, the GP responded by saying “how can you class yourself disabled when we have Olympians with artificial limbs”? Needless to say, he didn’t sign the form!!!! So when up against attitudes like that, why would anyone want to FAKE being disabled?

Able-bodied people will never & can never understand why we (disable people) NEED the things we fight for, like, accessibility, adapted housing, barriers removed, attitudes changed. How can they? They don’t have to live the life we live. They are blessed with being able to take most things we HAVE to fight for, for granted!! For example, let’s take something simple: Busses: Disabled people fought for many many years to get the wheelchair space implemented, now everyone wants to use it. Some parents with buggies will not move from that space if a wheelchair user needs it, believing it is their RIGHT to stay put!! Well let’s see now, the sign on the busses says what exactly:

Salesman selling wheelchair to abled explaining great parking and sympathy

“Should a wheelchair user wish to use this space, please move to another part of the bus”. So when I am left again feeling downtrodden, embarrassed, a burden, angry, wet & cold, yes I fake my disability. So, when it’s obviously clear, you are asked to move, this self-righteous attitude some of you have adopted is quite obnoxious! At the end of the day, you CAN take your child out of the buggy, fold said buggy and move, I CAN’T get out of my wheelchair and sit on a seat and fold my chair, no matter how much I would love to be able to do that.

The hate & personal attacks shown to disabled people is fed by the fact you are made to believe we are receiving special treatment or an added extra. This then makes you believe we must be faking it to get said treatment. So…………

When I’m having to have another painful procedure to unblock my catheter that’s caused another urinary infection, or radio-frequency facet joint injections into my spine to try to alleviate my pain, I mean, there’s no guarantee they are going to work!

I am suffering the terrible side effects of the medication I have to take just to keep me alive.

Losing friends because they have no idea what it is like to live my life and have no patience.

Stuck in bed again because I’m in too much pain to be able to move.

Losing the career I love because my employer sacked me due to the amount of sick time I have to take.

The list goes on and on and on!!!

Just because I have a smile on my face, doesn’t mean I’m ok!!

All the stuff disabled people fight for can take many years to get changed or implemented and most are not even achieved. All we want is to have the same quality of life most able-bodied people take for granted. The trouble is, the things we fight for often don’t even help as disabled people are not listened to so the entity making the changes rarely ever get it right. You believe it is special treatment and extra because something has to be an add-on feature because, in the structure of life, disabled people are forgotten about.

YES, I FAKE MY DISABILITY!!!!!!!!

Disability Blue Badge is Changing!

1 Comment / Disability / By Cazbarr / 23/03/2019 24/03/2022

The blue badge disabled parking scheme is undergoing its biggest shake-up since it was introduced in 1970. Previously, local authorities could not exclude those with hidden disabilities, but granting permission was very much open to interpretation. The changes now give councils clearer guidelines. Last month, the Department for Transport (DfT) confirmed that from 2019, people with hidden disabilities will be granted access to the scheme too. Read the full story here.

According to the Citizen Advice Bureaux:

If you’re disabled or have a health condition that affects your mobility, you can apply for a Blue Badge. You can also apply for a badge if you care for a child with a health condition.

Who can get a Blue Badge

You’re automatically eligible for a Blue Badge if you:

Are registered as blind
Get the higher rate of the mobility component of Disability Living Allowance (DLA)
In receipt of Personal Independence Payment (PIP). Scored 8 points or more in the ‘moving around’ area of your assessment. Check your decision letter if you’re not sure
Receive War Pensioners’ Mobility Supplement
Received a lump sum payment as part of the Armed Forces Compensation Scheme (tariffs 1 to 8). Been certified as having a permanent and substantial disability

If you’re not automatically eligible

It’s worth applying as you might still be able to get a badge. You’ll have to fill in an extra part of the application to show why you need one.

You should do this if:

Problems walking that is permanent, or that your doctor says are likely to last at least a year
You can’t use your arms
You’re applying on behalf of a child aged over 2 who has problems walking. A child under 3 who needs to be close to a vehicle because of a health condition

Source: Citizen Advice Bureaux

This raises a few questions:

Will the councils, private car parks, hospitals, high streets etc. increase the amount of disabled parking bays to accommodate all the new users?
Will councils tackle Blue Badge abuse that happens, more effectively?
If the blue badge is now open to people with all disabilities, how will this affect people with mobility conditions and people who need the extra space for wheelchairs?

We all know how difficult it is to find an empty disabled parking bay as it is. Once this change takes effect next year, can you imagine just how much harder this will become? I always believed blue badges were for people who had mobility disabilities. The wider bays were/are for people who need the extra space to be able to get into and out of their cars, for wheelchairs, straightening callipers or something else. Am I right to assume that everybody with a disability NEEDS extra space around their car? So, if not, why not introduce more disabled bays the same width as other bays, for those that don’t need the extra space?

Apply for a blue badge.

If you liked my blog, leave a comment below. If you would like to work with me or anything you would like me to blog about, don’t hesitate to Contact Me.

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