Norovirus No Handwashing: Wheelchair User’s Nightmare On Inaccessible Cruise! We saved for two years for our two-week Canary Island Cruise. We were excited leading up to our departure date. Then we find out the ship is plagued with Norovirus. Doing research days before our departure was scary. People were talking about how sick they had been while aboard the ship. Others said that when they tried to cancel their holiday because of the Norovirus. P&O told them they could cancel their holiday but would not be entitled to a refund.
Extra cleaning protocols were in place but P&O were still unable to get on top of the Norovirus. During my research, I discovered that the ship had a deep clean two weeks before our cruise. However, the most shocking part is that P&O had known about this sickness plaguing the ship since November (2023)! As a disabled passenger with medical conditions, I became extremely worried.
Warning! In-depth review of my cruise with P&O around the Canary Islands.
My Research
Cruises are advertised as luxury holidays where you are spoilt and looked after. You can visit a different country (nearly) every day. However, this was not my experience on my two-week cruise with P&O aboard their ship Ventura!
Being disabled, we all know how we must book our holidays well in advance. Therefore, we booked our holiday 18 months in advance to secure an accessible cabin. So imagine my disappointment when I found out a few days before our holiday that the ship was rife with Norovirus. I immediately researched to see if this was true and, if so, what P&O was doing about it!
It is reported that P&O Cruises has had norovirus on their Ventura ship since November 2023. In light of this, I was highly concerned that the only effort P&O seemed to be making today was getting staff to do extra cleaning around the ship!
While researching, I also read that the Ventura ship had been deep-cleaned earlier this year and again two weeks before our departure date. None of this seemed to have eliminated the virus.
Previous passengers also complained that when they tried to cancel their holiday because of the virus, P&O Cruises told them they could cancel but would not be entitled to a refund. As we were days from our departure I knew this would not be an option for us either. We had spent over £3,500 for our holiday and did not relish losing our money; therefore, we felt we had to continue with our holiday.
Our Family Accessible Cabin– E302
This was a 4 birth cabin with two single beds and two Pullman beds. Unfortunately, I found several issues with our accessible cabin:
The biggest issue was that the wet room flooring was NOT non-slip, making transferring in/out of my wheelchair extremely dangerous.
The sink is too high—It came up past my chest, making it difficult and painful to use as I can not reach past mid-chest level!
The vanity area was also too high. Again, making it extremely difficult and painful to use. I had to take painkillers to ease the pain caused to my back and shoulders.
The twin beds were at a height that made it impossible for me to self-transfer from my wheelchair. My husband had to aid in lifting me into the bed. This exacerbated the pain I was already experiencing!
The TV remote was always left up on the shelf where the TV sat, completely out of reach for a wheelchair user.
The towels supplied were always hung on the grabrails next to and behind the toilet. Making them out of reach to disabled people with reach a grab disability like me!
Shower seat – Trying to reach the poorly placed handrails and transfer onto the shower seat, I almost knocked myself out as I hit my head on the toilet handrail between the shower and toilet.
The toilet roll holder had a flap that needed to be lifted to use. Due to my dexterity, I couldn’t do this.
The cabin made terrible noises. It was as if the plastic walls/fixtures, etc., were rubbing together with the swaying of the ship.
Our room temperature seemed to reset itself no matter where we set it. When my legs get too cold, they go purple and spasm, I had many painful nights.
The Issues
I am an electric wheelchair user. Had I been in a manual wheelchair, which can have lower seat heights, I would have found using the bathroom sink and vanity area impossible!!
Because the floor was so slippery, I had to have my husband help me use the toilet no matter which toilet I was using on and around the ship. Something I am normally capable of doing independently! Whoever signed these “accessible rooms” rooms off as fit for purpose needs a new job where they have nothing to do with disability access because, to be frank with you, they haven’t got a clue about disability access. It could have been a severe injury.
The motion of the ship was the worst I have experienced, making our cabin extremely noisy. We reported this to reception but heard no more!
On Board
Disabled Toilets
Disabled toilets are situated around the ship:
Deck 5 – Midship
Deck 6 – Forward | Midship | Aft
Deck 7 – Forward | Aft
Deck 15 – Forward | Midship | Aft
Deck 16 – Forward | Aft
Deck 17 – Aft
Deck 18 – Aft
Be careful; again, there is no non-slip flooring. The sink height came up to under my armpits. There is a shroud around the front edge meaning the depth of the sink to the taps/soap made it impossible for me to reach.
Considering I was on a cruise ship rife with Norovirus, I was mortified that I could not wash my hands after using the public disabled toilets!! I had no choice but to rely on my hand sanitiser until I was able to wash my hands.
The Ship
Ventura has 4 Pools, 21 Restaurants and bars, 8 Entertainment venues. The ship is 16 years old and looks it. Its decor is dated, and in many places, in need of much TLC! We were very lucky to have been invited to view the Ventura before her maiden voyage. We loved the automatic doors on accessible cabins, features, games etc. However, coming on board for an actual holiday, we were shocked at the decline in features, décor, and general grubbiness of the ship.
The food across the ship we found to be very bland and not much viariaty available in any of the restaurants. The shops were fantastically overpriced. On previous cruises, we have always enjoyed the shops, especially with the special offer events they have. However, this was not something P&O offered this time round.
The captain forgot to engage the stabilizers. I have never encountered a ship to be this unstable. I was physically sick on the second day, (even with anti-sickness tablets), thankfully the only day, but for the whole holiday I suffered from nausea and a heavy head. Another reason I will NEVER sail on Ventura again!
Entertainment
A lot of the time I found the venues to be freezing. This made for uncomfortable viewing and put me off going to too many shows. Which is a shame as the shows I did suffer the cold for were fantastic.
I would have to say, the highlight of our evenings on board the ship, was playing in the Casino. Be warned though, the casino is alongside a bar that spent most of the time showing football. I refused to play in the casino when football was on. You’re trying to play in the casino with real money, and you have to endure people jumping up and shouting at a tv!! Who on earth was the brains behind this one?
A casino next to such a noisy, open-plan venue where kids can run around? In all my cruising experience, I have never known a casino to allow children the freedom to run around. I have always seen notices on other ship casinos that being a gambling venue, children were only allowed in the casino if it was being used as a thoroughfare to another part of the ship. Obviously, not a concern on the Ventura.
Salon
On our last formal night, I thought I’d try and cheer myself up with a hair appointment in their salon. What a big mistake that was!! My hair was worse than I went in! I didn’t complain as I couldn’t get back to my cabin quick enough to try and do something with the complete mess that had been made of my hair. A complete waste of £60!!
I booked in for a cut and blow dry with a hair style that looked spikey. My hair looked NOTHING close to the style I wanted, with what he cut off my hair, I would have lost more on a windy day!! The hairdresser (and I use that term loosely) had left a white stringy product still very visible through my hair. I was more than disgusted. It’s hard to describe what it looked like but imagine a birds nest sat on top of my head and you’ll come close!
Conclusion
My two week Canary island cruise was plagued with the fear of catching norovirus as the company I had booked my £3,500 holiday with did not supply accessible wash basins in their own accessible toilets!
My stress/anxiety went up, my need for the toilet went up, the situation of not being able to wash my hands rises, my exposure to Norovirus increases – My stress/anxiety went up, my need for the toilet went up, the situation of not being able to wash my hands rises, my exposure to Norovirus increases – My stress/anxiety went up, my need for the toilet went up my need for the toilet goes up, the situation of not being able to wash my hands rises, my exposure to Norovirus increases – This was me daily for two whole weeks on my holiday with P&O and why I am so distressed and angry?? IBS sufferers will know and understand my pain.
I spent all my time on and off the ship looking for the nearest toilet at least 10 times a day! BUT…….As soon as I got home, my IBS settled immediately!
Every single person we spoke to while on board (and I spoke to quite a few in the 2 weeks) all agreed how terrible the food/ship/motion of the ship was and how they would never sail on Ventura ever again, and probably not with P&O again either. This speaks volumes on how P&O has declined as a company.
To add insult to injury, two days after getting home, I tested positive for Covid! Thanks P&O!!
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Toxic Behaviour By A Charity Trustee With No Board Intervention – I applied to become this disabled charity’s next secretary in a non-paid role. The treatment I received from the secretary was shocking, to say the least. I was manipulated, video-called morning, noon and night to the point I felt like I was being stalked. These calls mostly consisted of the secretary giving out to me about the charity, and trustees and breaking confidentiality and GDPR by divulging personal information about present and past trustees! The board just sat back and did nothing. It took a formal complaint to get the board’s ass in motion!
Application To Become Next Secretary
February 2023 – I submitted my application to this charity in response to their advertisement for a new secretary. The initial stages seemed promising, although I perceived the application process to be rather informal. There was no requirement for completing an application form or detailing my skills. These elements one would typically anticipate when applying for a position of such responsibility.
Following a series of video calls with the secretary, it seemed I was being offered the role. Seeking clarification, I pressed for confirmation. The secretary confirmed my assumption, stating that I had secured the position, and mentioned that nobody else had applied anyway. While she would personally train me for the role, she confirmed I would have to officially be voted on by the members at the next AGM meeting in October 2023.
Over the next few months, I found myself receiving daily video calls from the secretary, most days, consisted of more than one a day. While I expected these calls to be related to my training, they primarily revolved around her venting about her issues. This included expressing frustration with the rest of the board’s perceived incompetence, and claiming that she had to handle everything. I was also shocked that these conversations also included inappropriate disclosures of personal stories involving other trustees and members. Breaching Data Protection regulations, something as a trustee she would have been entrusted to uphold.
In-Person Training
May 2023 – I underwent in-person training, which required a three-hour drive to her location. We spent the next two days at one of their local pubs that contributed to the charity’s fundraising efforts. At lunch, both my husband and I expressed we would be covering our expenses. However, we were informed that, as part of charity tasks, all trustees were entitled to a contribution of up to a certain amount for meals. Despite our protests of how we were not trustees and insisted on paying for our food. We were repeatedly told (sternly) that the charity would cover the cost. To avoid conflict or creating an uncomfortable atmosphere, we reluctantly accepted.
It was at this in-person training that the conversation of the charity’s website first came up. It was explained how the charity was paying a lot of money for their hosting etc. Me being me, offered to help if the charity needed it. The rest of my training consisted of being shown how to sign in to the different charity accounts and I was sent home with a list of all the log-in details and 16 boxes of charity-related literature that we picked up from their lock-up on our way home.
Video Calls
I was already receiving several video calls a day. Which at first, didn’t seem too intrusive as they were about the secretary role. Unfortunately, they went downhill very rapidly. The conversations, consisted of her moaning and giving out about one thing or another and me listening. I got the history of her life, family, and ex-partners, specifically a story about 2 ex-trustees one of which she accused of “stealing her boyfriend”. Child protection issues of a relative. Then she would constantly moan about how terrible the charity was and how all the other trustees were useless.
Then the calls became very ugly! The secretary told me many stories about other trustees past & present including names and specific details. These stories were both very personal and accusatory. She breached confidentiality at the very least. I believed this woman knew no bounds!
I suspected that much of what she told me was intended to influence my perception of other trustees. She appeared quite comfortable divulging personal information and expressing anger towards other trustees. How badly the charity was being run, and the incompetence of everyone involved. Watching her demeanour and hearing her speak so angrily of others made it clear that when she is faced with the slightest provocation, she gets angry and lashes out.
This concerned me and made me feel extremely uncomfortable every time she called me. This had been going on for several months now. I feared that if I pointed out the inappropriateness of her sharing such stories, this would provoke her. Attempting to discuss matters with other trustees would result in her directing her anger towards me. I didn’t want to find myself at the receiving end of what I was witnessing. I felt intimidated and trapped in a situation I no longer wanted to be in.
Trustee Meeting
May 2023 – I was invited to a trustee meeting to discuss the charity website. It was in this meeting I believed an agreement had been made where I would build the charity a new website, and then host it for free on my third-party hosting package. I would also be responsible for the upkeep and maintenance of the website (alongside one of the trustees that I would train in the software). It wasn’t until 5 months later AFTER the website had been built and gone live. I was told in writing that there was no agreement in place. More on this later. I attended a few more meetings, and then everything went south!
I noticed at times when I mentioned things missing in the meeting minutes, the board seemed unphased and not overly bothered if they were rectified. The secretary always apologised but gave excuses as to why this happened. The meetings were recorded and transcribed and the secretary just copied and pasted the transcript (word for word, including any spelling mistakes), so I couldn’t understand why important parts were constantly missing. The board would complain at how the minutes were often 16 pages long but again, no one seemed to do anything about it.
Website
Believing an agreement was in place, I initiated building the charity their website. I had many conversations with the secretary and chair (who are husband and wife) about the look, feel and design of the website. The secretary put me in touch with the previous hosting company to arrange the transfer of the domain name to my third-party hosting.
Factsheets, charity policies and images that needed to be included on the new website couldn’t be found. It turned out that not one trustee knew where any of this information was or if it even existed. There were no charity policies seemingly in place, no one had the original images, nothing! This made my work extremely difficult as I had nothing to work with. Needless to say, I managed to get a website up and live within approx 2 weeks. Still lots of background work to be done but at least members and professionals had a website they could view and use.
Trustee Meeting Part 2
June 2023 – In one of the trustee meetings, things became rather heated when discussing the charity’s annual event. After this meeting, the secretary sent a very nasty email to all trustees including me. It was in this email I witnessed the secretary persecuting other trustees. She accused one trustee of not needing an accessible room at the event hotel because she wasn’t disabled enough and how she expects an accessible room now she is a trustee. She also accused all trustees of being useless.
I was so shocked by her comments, that I felt physically sick. There seemed to be no reason for her outburst. I could only conclude it was because she wasn’t getting her way. I couldn’t believe how her tone was so accusatory, venomous and abusive, especially towards her colleagues. And this was the woman who was training me for her role?
My fear of not wanting to antagonise her proved to be right. Again, I can’t go into details but when someone starts with “This will not be a pleasant email to read for certain trustees and will undoubtedly upset a few”. You can’t help but feel that person knows exactly what they are doing.
The Backlash Begins
Repeated Calls
The frequency of video calls has escalated significantly. I found myself receiving 3-4 calls a day, sometimes even late at night, with no prior notice or consent. The secretary had intruded into my daily life, creating an expectation that I must always be available to take her calls, regardless of my whereabouts or activities. This constant demand had become emotionally taxing, particularly as many calls extend for over an hour. I was repeatedly used as a sounding board, compelled to drop everything and listen, irrespective of my own priorities.
Ignoring Calls
I tried ignoring her calls but she would just continuously call me until I answered. It felt like she was purposefully trying to wear me down. (It was working). So I got to the point where it just seemed easier to answer her the first time. You know, get the call over with. It’s hard to vocalise how she invaded my life and made me feel so drained, worn out and quite frankly trapped and very worried. It was like my own life was not my own. I don’t mean to sound melodramatic but this was awful, day in, day out! In some of these calls, she would screenshot us and then plaster them on social media. Again, this showed no bounds or respect for anyone else.
On occasions, I explained how I was in the middle of something and couldn’t talk. The secretary would insist the call wouldn’t take too long or indicate it was urgent. When I took her call it would turn out neither was the case! On one of these occasions, I was in an online meeting when she tried calling. I had to pause my meeting to explain this to the secretary as the noise of the calls repeatedly coming in was disrupting my other meeting. Her response was of annoyance and inconvenience. This validated my feelings and how I felt I was at her beck and call. This was so intimidating and overwhelming. I was at a complete loss!
Continued Behaviour
I was left with no option but to now distance myself personally and try to keep things on a more professional level. Her behaviour made it clear it would only be a matter of time before I would become her next target. I was not proven wrong!
I removed & blocked her from my personal Facebook and Messenger, so no more video calls. Contact was now only via email. I assumed this angered her as she then changed all the passwords to all the charity accounts I had access to. She also removed me from the charity bank that she had signed me up to. I couldn’t help but feel how childish her behaviour had become.
Then, the secretary demanded the administrative login to the website I had been building. (This was the only account I now had access to). I explained although the website was live, there was still plenty of ‘back-end’ work that still needed completing. The charity already had access via a user account login for any tasks they may need to do while I was still working on it. So I couldn’t understand her demands. This escalated to the point where she accused me of holding the website to ransom! Really?
The secretary was not still not happy so the demands kept coming. I knew she wanted the login so she could lock me out of this account also. If this happened, who would be able to take over building the website without me explaining everything I had done? Very counter-productive. This showed her controlling personality.
No Action
What struck me the most though, is how no one else seemed to be phased by her behaviour. No one commented, intervened or anything! I had made comments in response to the secretary’s behaviour. Explaining how meeting minutes were incorrect or missing important information, how she was changing passwords, demanding FULL access to the website account and how I felt this was to lock me out of that also.
I also explained I felt she was being unprofessional, and untrustworthy and should no longer be secretary. The board just let her get on with it.
I had a couple of the trustees message me telling me to keep my chin up, and how this was normal behaviour from the secretary when she doesn’t get her way. The board never knows whether they are coming or going with the antics of most trustee meetings. I even found out how the secretary was responsible for previous trustees leaving the board because of how she treated them. At this point, I too was feeling like I just wanted to walk away but I was so excited to take on this role. I thought, well if/when I take over she will be no longer an issue….Oh boy, how wrong I was!
So the board condones toxic behaviour? Good to know!
Formal Complaint
8th September 2023 – I can’t describe the full treatment I received, (GDPR & Data protection) but this went on for over 7 months. I kept being told to hang tough, she’d be gone soon. Hmmm
Then the s*** really hit the fan! An email arrived in my inbox informing me a complaint had been made against me. I was horrified! I’ve never had a complaint made against me, ever! Of course, I instantly knew who had made this complaint. I couldn’t believe the audacity of this woman. To put me through all the crap she had dished out and then to add insult to injury, make a complaint against me.
She accused me of abuse, bullying and constant belittling remarks that have impacted her personally and professionally. Yes, I got to the point where I let the board know of her behaviour. Yes, I called her unprofessional, untrustworthy and incompetent. What else would you call a person who tells personal accusatory stories of others, omits important information from trustee meeting minutes or someone who constantly spells terribly and whose grammar is awful? When in a semi-professional role, there are such things as Grammarly, so no excuse really, is there?
Asserting that someone is incompetent and untrustworthy isn’t inherently bullying or abusive, especially if the claims are factual and supported by evidence, as I had presented at the time.
27th September – After a long time of taking everything in, I too submitted a formal complaint. A complaint of 14 pages which took over 2 weeks to write. Documented everything and supplied with all the evidence needed. (I do wish I could share this with you all, it explains everything I went through). You’d think this would be the end of this horrid saga. Oh no, so much more happened…..Buckle up!
Complaint Against Me Meeting
I had a meeting with a couple of the trustees. In this meeting, the subject of the website also came up. They told me how they fully understood why I didn’t give full access to the secretary. This left me confused as to why then they didn’t back me up at the time.
It was also mentioned how they were now thinking of moving the website from my 3rd party hosting to one they would purchase. It was also hinted in this meeting that the resolution the secretary wanted to her complaint was for me to not become the next secretary.
Hindsight is a wonderful gift, when looking back on the whole situation I can see already how the charity is pulling away from the situation the secretary has created! It would seem the charity has already decided I won’t be the next secretary.
My Formal Complaint
During my meeting, I was informed that both secretary and chair, (husband and wife), had abruptly left the charity on such and such date. Coincidentally, their departure aligned precisely with the submission of my extensive 14-page complaint. It was as if someone had immediately informed them of my complaint when submitted. This would have been against the charity complaints procedure. This development feels suspiciously orchestrated by the two of them.
According to the charity’s newly drafted (temporary) complaints procedure below, you can see the procedure shows step 7/10 (over a week later after a complaint has been submitted), does the other party get notified of a complaint being made against them. I can’t remember the exact date but I know the secretary left either the day I submitted my complaint or the day after.
Overview of the complaints process.
1. Complaint received by a trustee. This should be read by the recipient.
2. The Trustee who has received the complaint should contact all other trustees whom the
complaint is not about or who do not have a conflict of interest. This should where reasonably possible be done within 48hours of the complaint being received.
3. The recipient of the complaint should acknowledge to the complainant that the complaint has been received and the rest of the board have been contacted.
4. A meeting between any trustees not involved or with a conflict of interest should take place within 7 days of the recipient making contact with the other trustees. The purpose of the meeting is to decide a team of 2-3 trustees who will carry out an investigation into the complaint/concern. It should not be a long meeting.
a. The recipient to lead meeting.
b. Recipient to remain point of contact with complainant – unless there is a conflict of
interest in which case another trustee takes over this role as named person.
c. The other trustees, not the recipient, are elected at the above meeting to investigate the
complaint/concern. This is to ensure impartiality. Hereafter known as the investigating
team.
5. Once an investigating team has been decided they should read the complaint statement made by the complainant. A meeting should be organised with the complainant.
6. This purpose of this meeting held between the investigating team and the complainant is to clarify or confirm any details. Including finding out how they would ideally like the situation to be resolved. (This may be organised by the investigating team in a way in which one person takes the lead during the meeting with the complainant and is their point of contact, and the other takes the lead when speaking to the other person(s) involved, or maybe both meetings led by the whole investigating team. This will be decided by them.)
7. Where the complaint is against or concern is about an individual, the investigating team should then contact the other involved parties to inform them that a complaint has been made and to organise a meeting with the investigating team. The purpose of this meeting it to raise the concern/complaint with them and establish their sequence of events.
It also came to light the secretary had told other trustees the same things she had told me about others. Her behaviour had been going on for some time.
Secretly, of course, I couldn’t help but think how the charity was getting exactly what it deserved for sitting back and being complacent in how the secretary treated me! (Isn’t there something about those who sit back, do nothing and just watch are just as guilty as the offending parties?)
Of course, the secretary just upping and leaving like she did, meant the board had little to no information regarding the event that was a month away. Throughout these seven months, I witnessed the secretary orchestrating situations to assert control over the charity’s operations, making decisions to fulfil her own desires and requirements. However, she conveniently portrayed herself as the victim whenever it suited her.
It was around this time the charity contacted the Charities Commission, I don’t know the outcome of that.
Website Part 2
I’m doing my best to keep this in chronological order hence why you have part one and Part 2 of a particular subject.
As I said previously, I was led to believe there was an agreement in place regarding the website. When I received the charity’s official response to my complaint regarding the secretary, it was in this response that the charity adamantly stated there was no agreement in place. I’m pretty sure you can understand why now I have become rather angry.
We are five months down the road from the website going live and considering all the conversations between myself, the secretary and the chair. Not one trustee came to me saying I should not be doing what I was/had done. All the trustees commented on how wonderful their new website was and how it looked current and in line with other website designs.
So once again, was this in preparation for the charity to distance themselves from this whole saga that I had been manipulated into?
The Annual Event
The charity’s annual event was almost upon them, the website advertised the event and guest speakers that would be attending. It was difficult to tell who or what company was attending as it was pretty much all in one paragraph, so rather than being laid out nicely with each person/company as a header with a little description underneath, it was all written as one paragraph so you had to fish through the information to find each attendee and their information.
It was evident the charity had no clue as to what still needed to be done or what had been done already by the secretary as at the 11th hour, it came to light that the contract with the hotel where the event was taking place, had not been signed. So there was a mad rush to get that sorted or the charity may have lost the hotel! Again, this showed the incompetence of the secretary’s abilities as she was organising the event as she did every year.
The event went well considering the upheaval that was left for the board to cope with. However, many people that had booked the event, didn’t turn up. This may/or may not have been because of the terrible weather that was happening at the time. It was mentioned that the secretary may have put people off attending to be spiteful. As the charity paid for everything, those who didn’t turn up wouldn’t have lost any money. However, the charity lost out instead.
Data Protection Breach
The secretary and chair insisted on delivering the boxes to the hotel, filled with charity literature, flyers, member forms etc. rather than having a courier deliver them to the registered charity address. Therefore, it was agreed they would leave the boxes (approx 30) in a room that would be locked afterwards. (Certain people/trustees believed this was so the secretary could witness how much of a failure she believed the event was going to be due to her sudden departure).
However, they deviated from this plan and left all the boxes unattended in the main foyer, just inside the hotel’s main entrance, before departing. This was very alarming, considering the sensitive personal information contained within the 600-plus member forms alone. Names/addresses/phone numbers/disability/other family details etc. I know this as I had been shown them during my early training days.
To this day (to my knowledge), neither the secretary nor the chair faced any consequences of their actions. I don’t suppose the members not there at the time knew of this either. I can confirm, however, that the boxes were very quickly attended to.
So, not only is the secretary prepared to divulge personal and accusatory stories verbally to practically anyone who will listen. She is also prepared to leave data-protected information in a public place unattended. The secretary would not have known that these boxes would have been attended to as quickly as they had been! In my opinion, this woman should never be allowed to be a trustee of any charity in the future! Hell, she shouldn’t have been a trustee to this charity!
So, I’m Not The Next Secretary!
The acting chair of the charity asked if she could talk to me at some point during the annual event. Later, my husband and I, the acting chair, her husband, and another trustee were in a room by ourselves. The chair informed me that there had been a Facebook post about me that the secretary had written. The chair refused to enlighten me on the contents of this post. It was only later that weekend that my daughter got in touch with me to notify me of the same post. She was able to screenshot it over to me.
It was during this conversation that the chair suggested it might not be an opportune moment for me to assume the role of secretary, citing concerns over the secretary’s behaviour. Instantly, I found myself overcome with emotion, breaking down in tears in front of everyone present. She went on to say how I could work in the background until a more opportune time. Ermm, isn’t that what I’ve already been doing?
As the day wore on, my anger grew as I sensed I was being discarded like rubbish. Instead of being met with empathy and support, I was once again frustrated that I was at the mercy of the secretary’s behaviour! It felt as if all my efforts had been taken for granted, leaving me feeling completely abandoned and without any support during such a challenging situation. Again, hindsight is a wonderful thing, these are not the kind of people I would want to work alongside anyway.
20th October 2023 – As it was a public post, I’m not breaking any Data Protection but I have removed any identifying information.
More Accusations
A couple of points first…
How could I be holding the website and emails hostage when all the trustees had login details for the website? None of the trustees commented or stood up for me, they just ignored everything.
If I was holding the emails as hostage how come the charity was still able to receive emails? Again, no support from the board.
Even after leaving the charity and stepping down as secretary, she still accessed charity accounts to be able to remove herself from the member database, and MailChimp! Who knows what else she had done, board bothered? Obviously not.
24th October 2023
Point 1 – I threatened her? Yeah, if you say so love. Here is an exact copy of the email she is referring to (again, I have removed all identifying details:
Good afternoon everyone.
I won’t be attending today’s meeting for a couple of reasons. I would like it noted that I have not taken this decision lightly, hence my last-minute notice:
It has become evident that my role as a trainee secretary holds no further value.
I refuse to be the cause of any discomfort that may arise, as has happened in the past.
I am determined not to subject myself to an individual’s ego-driven agenda and become a target of victimization once again. I’m not willing to volunteer myself into an environment that we all recognise would likely be uncomfortable, contentious, or even toxic. (It’s quite possible that I wouldn’t be able to restrain my opinions.)
Since I’m well aware of the likely discussion topics based on the agenda, I’d like to offer my composed and rational response.
Website – I assume handing over FULL administrative access
You may or may not be aware, but there is an existing agreement regarding the website. It seems probable that I would be asked to provide FULL administrative access. However, complying with this requirement would lead to a situation where I’d lose access to the website, similar to previous occurrences.
Taking such steps would effectively amount to violating the agreement. I find myself contemplating how this situation would be perceived if I were the one considering withdrawing from an agreement with charity.
For clarification, I would recommend reviewing the minutes of the meeting held on May 21, 2023. Regrettably, these minutes do not include the details of the agreement that was reached, (I wonder why?) making it impossible for you to verify this aspect. (This does appear to be an ongoing pattern).
The following information is very clear:
Guidance – Charities and meetings: Source: Charities and meetings – GOV.UK (www.gov.uk)
9. The role of the Secretary
9.7 On the day of the meeting
It should be remembered that decisions reached at a trustee or members’ meeting are collective decisions and the decision is binding upon all charity trustees and members. It is for this reason that all charity trustees/members are encouraged to participate in all debates.
12. Minutes
As the minutes are the charity’s record of decisions it is important that they are accurate and stored properly. They may need to be used to support decisions approved at meetings and to show approval and adoption of the audited accounts. The minutes of all meetings, particularly trustees’ meetings, need to be kept during the existence of the charity.
This agreement solidified my commitment to constructing TAG’s new website entirely from the ground up (www.arthrogryposis.co.uk), a project valued at over £2500. Additionally, I took on the responsibilities of providing hosting services and ensuring the ongoing maintenance of this website, all at no cost. This is projected to result in saving well over £900 per year for TAG.
Furthermore, I was tasked with creating a written agreement detailing the contingency plan for the website should I not assume the role of Secretary/Trustee or in the unfortunate event of my passing. I’m pleased to confirm that this agreement has been drafted and appropriately signed.
The website remains a work in progress, with various backend elements still yet to be implemented. Based on past experiences, I am not comfortable providing complete access to the website, only to find myself locked out once again.
Given that there are only 2 months remaining for the current Secretary’s tenure, I fail to see a reasonable justification for granting full administrative access at this time.
It seems more logical to defer such decisions until after the AGM has taken place and the roles of treasurer, chair & secretary have been definitively established. This will provide the appropriate context for determining the way forward.
In the event of the site encountering issues (as it has before when attempted updates caused problems), who would resolve the issues and get the website operational again?
Someone said: “I believe that at least two trustees should have access (and surely the secretory should be one of them?) to edit/update the website?”
To clarify, login credentials were supplied to all trustees on the 25th of June 2023. Both trustees & Secretary are able to do exactly what was requested and more.
What you can do:
Create/delete/update posts
Create/delete/update pages
Add/remove images
Approve/decline/reply to comments – If and when set up (if needed)
Add/delete templates
Change charity profile
Change website theme
What you can’t do:
Update the software – Software update of WordPress/Plugins/Themes – This is set to auto-update, so wouldn’t need access.
Can’t change GDPR notice – Would only need changing if the law requested it to
Elementor software info – This includes the backend system info
WP Forms – Not been used to create charity’s email forms anyway
Change Header – I can change this if/when needed in the remaining time-frame
To be fair, the access that has been restricted wouldn’t be required for a considerable period, if ever.
Emails
Outside of being removed from all accounts, I have no idea what this would be about.
Omeo Contact details
All conversations concerning participation in the FW occurred in person. Subsequent communication took place through the contact page on their website.
If a secretary struggles to locate public contact information for a public company, it raises questions about their proficiency.
It’s also worth noting that we do not possess personal email/contact details.
Complaints
Oh, the list is quite extensive. Let’s begin somewhere.
I offered my help because I genuinely want to see charity prosper, succeed, and become the best it can be. It’s disheartening to contemplate how I’ve been treated despite my sincere intentions to contribute.
Sadly, my efforts appear to have been manipulated and exploited. It’s intriguing how, soon after successfully initiating everything, I found myself systematically and progressively removed & pushed away from charity.
This included:
All social media accounts
Removal as admin from the Members only Facebook group
All Email accounts
The charity bank account
All Microsoft emails & forms
Basically removed from everything related to charity
I was included in these tasks as part of my preparation to potentially become the next Secretary (pending the vote). Therefore, it’s puzzling to be suddenly removed from all of them. Doesn’t this go against what charity originally invested in?
I have (as have others) noticed previous minutes have been consistently edited inaccurately. On this occasion, I would recommend that all of you request a complete and precise copy of those minutes, allowing you to independently read the agreed-upon details from the meeting, rather than solely relying on my account or the edited version!!
Kind Regards
Caroline
Did I threaten her? I have read and re-read this email and I see NOWHERE, where I have made a threat towards the secretary!
Point 2 – Sat there with another trustee opposite the bar? Well, here’s the thing. I asked the hotel for all CCTV footage of my activity in the hotel before, during and after the time frame of the secretary attending the hotel. The CCTV shows my husband, said trustee and me zooming away from the reception/bar area as soon as we saw her arrive. Then we disappear around a wall out of sight. If I had “kept rolling forward giving daggers”, this would have shown up on the CCTV. As with a lot of this blog, I can’t share this footage as the other two people with me are easily identifiable, even though their faces have been obscured. If I thought for one moment I could share it, believe me, I would.
Oh, she kindly had this attached to that post. There were other posts and memes but not worth boring you any further. Except to say, I responded only once to her public abuse of me on my Facebook:
30th October 2023
It has been brought to my attention that I have had some serious public accusations made against me. I would like to take this opportunity to confirm these are very much untrue! I have 14 pages of evidence to back this up but due to the nature of some of the content, I don’t feel it is appropriate to share this. Not only that, GDPR prevents me from sharing this as there are a lot of personal information and accusations about other people that I had to include.
Unfortunately, because I didn’t succumb to this person’s manipulation to taint my opinion of others or become their puppet/pawn, they have chosen to target me. It saddens me to think that someone’s life may be so devoid of fulfilment that resorting to such actions is their means of feeling empowered and significant.
I sincerely wish them the best in their future endeavours, and I hope they find the love, support, and assistance they so clearly crave.
Her accusations killed me as no one knew what she had/was putting me through. Even when she wasn’t supposed to have any contact with me during her formal complaint against me, she still contacted me to request my £20 contribution for the annual event, even though she already knew I wasn’t going which she confirmed in her post above. (I was later talked into going).
Website Part 3
6th December 2023 – The charity now claims there was no prior agreement and explains they want to transfer the entire website to its new hosting plan. Feeling that the agreement was being rescinded, I deemed it fair to request payment for the work I had done, knowing full well they wouldn’t pay me.
The charity received an invoice for a fair amount. I wasn’t going to hand over a fully functioning website valued at over £2500 without a fight. I wasn’t willing to be taken for granted any longer by the charity. They refused to pay.
January 2024 – The website was directing donations via cheque to the former secretary’s home address, you know, the one who abruptly left in September 2023. I informed the trustees. A week later, no action had been taken. Frustrated, I decided to hide the website from public view and informed all members of the reason. The charity responded with a feeble excuse, citing the need to wait until after the AGM in November before updating the registered address. They also attempted to portray me as the antagonist.
Let me get this straight! They claim they couldn’t update the address until after the AGM in November 2023. However, I received a letter from the charity on December 20, 2023, with the new registered address. Yet, in response to my notification to all members on Facebook, on January 10, 2024. They responded insisting they couldn’t remove it until after the AGM. Does any of this make sense to you?
as the AGM took place in November, we couldn’t update trustee information, or our official new address until then
The information was text on a page, therefore this information could have been completely removed and anyone wishing to donate via check could have been asked to e-mail the charity for further information! IT’S NOT ROCKET SCIENCE!!
No Website
20th January 2024 – The charity refused to pay me and as I explained they legally own their domain name. They gave me 2 options, give my hosting company authorisation to transfer the whole website over to their hosting, or to release the domain name. So obviously, I deleted the website and handed over their domain name.
It was sickening to see all my hard work disappear just like that. The charity over the last month or so kept changing their story as to whether or not there was an agreement in place. At this point, however, I just wanted rid of the whole horrid, toxic situation! My personal life had suffered enough due to this charity, I just wanted rid of them.
I had done everything asked of me by this charity, even my husband made items for their annual event and handed every penny earned over to the charity. He took nothing for himself. Yet here I am now being portrayed as the bad guy? Wow, so glad now to be through the other side.
That was 4 weeks ago and the charity still doesn’t have a website. Their holding page is missing the images too, just a description of what should be there. (oh, was that a bit catty of me?)
The Charity As A Whole
Having practically a year’s insight into this charity, I feel it is an environment where the trustees try to do things very much for a quiet life. Don’t want to rock the boat! I have no idea as to why none of the trustees came to my aid when witnessing the behaviour of their secretary towards me or when she persecuted another trustee.
The board knew what the secretary was like, that much is obvious. They let me be trained by this person, and travel to meet her in person without a shred of concern for my well-being, safety or anything. The trustees just sat back and let her get on with it! What on earth do you call this behaviour? Negligent? Toxic? Narcissistic? Maybe all of them.
Even when the board knew of the stories the secretary had told me, again, not one seemed overly concerned, just saying, “Yeah we know, we’ve been told the same”. Some of these stories are about you, how can you be so blasé about it all?
It’s truly disheartening to witness such behaviour, especially when it’s so far removed from one’s own principles and values. I know I could never harbour such vindictiveness towards another individual; it simply isn’t part of my nature. That’s why it hurts so much to experience this kind of treatment firsthand.
Not In Place
No Safeguarding policy or officer – All charities have a responsibility to ensure they don’t cause harm to anyone who has contact with them. Charities working with children or adults at risk have extra responsibilities. As a trustee, you must make sure your charity fulfils this responsibility. Even if you delegate some activities to a safeguarding lead or group, you retain overall responsibility. Harm and abuse have a devastating impact. A strong safeguarding culture means:
you protect people
you minimise the risks of any harm or abuse
everyone has confidence their concerns will be dealt with appropriately
There is no completed complaints procedure in place – One had to be created for the complaints: “Please see the attached overview of our ‘Compliments, Comments and Complaints’ document. This is a draft version, as we are currently updating our policy documents”. I never received the updated version.
The Secretary’s address was advertised on the website for donations by cheque to be sent there. – Has she received any, who would know
The secretary had all passwords and access to charity-related accounts for a while AFTER departure! – These were not changed immediately
The worst part? THE BOARD SAT, WATCHED AND DONE NOTHING!!
Conclusion
I haven’t been able to go into as much detail as I would have liked or supply the proof that I have sitting on my computer. However, this should not discredit the treatment I received from this charity and its secretary.
I believe one of two things should happen.
Every trustee should be made to go on courses to learn how a charity must operate, safeguarding legislation, data protection legislation, proper administrative skills, and any other related skills to the running of a charity.
All trustees be replaced with people who know what they are doing!
The secretary tried to influence my opinions of others by divulging very personal details of other trustees and members. Pushed other trustees from the board if they didn’t agree with her
Received repeated video calls morning, noon, and night!
Manipulated into creating the charity a brand-new website for free
Told I was unimportant as I was only a trainee.
My life was taken over so much that my brain fog was at an all-time high. My IBS also flared up astronomically.
If I didn’t appease the secretary’s whims, she became controlling, intimidating, manipulative, and angry.
I became sick every time I received an email for fear of what it would contain this time.
My sleep was non-existent, which of course exacerbated my other ailments and my mood.
I’m not ashamed to say I cried myself to sleep many nights during this ordeal. I became so depressed that my life was put on hold until very recently as this ordeal has finally been put to rest.
Contact Me
If you would like to work with me don’t hesitate to Contact Me. Feel free to leave a comment below.
Keep Warm & Cosy With This Fleece-Lined Cover – Review.A friend suggested I try this fleece-lined lower-body wheelchair cover as my legs are always cold, which causes me a lot of pain. Which is made worse when out and about, especially in cold weather. I have been using this cover for almost a week now.It’s probably the best product I have tried to date. So I wanted to share my experience with you.
The Product
There were two items on Amazon (no, I’m not affiliated) practically identical. One was cheaper than the other, but didn’t look as good quality, therefore, I decided to go with this one. I am extremely happy with the one I purchased: Wheelchair Cover
It’s advertised as being suitable for people up to 5ft 9″ max. I would disagree with this. I’m 5ft 2″ and if I pull the cover up so the sides are at my waist (which is where I would expect them to be) I find my feet are hitting on the bottom inside of the cover (without shoes on), leaving me very little room for shoes or movement.
The back part of the cover has two elastic loops which you can put over your wheelchair backrest handles. I’m in an electric wheelchair, therefore, as I have no handles on my chair, I’ve had to use straps that I already had to attach to the loops (link at bottom of the page). Then I tie them around the bar behind my backrest. I do advise utilising these loops as they keep the cover in place whilst transferring in and out of your chair.
As we all know, it’s extremely expensive at present to put our heating on, therefore I use my fleece-lined cover even while sitting indoors. I also have a fleece-lined shawl that I wear with my lower body cover (link at bottom of the page) and I have found this allows me to sit indoors without having to put my heating on as often.
The outer cover is waterproof (the reason for me purchasing this). I have not used it in the rain as yet but it certainly looks like it will work well.
Using The Cover
This cover comes up to your waist area (depending on your height) with an extra bit that goes up the backrest part of your wheelchair. As I previously mentioned, the backrest has two loops attached so it can be hooked over the handles of a wheelchair. I find this helps the cover stay on your chair while transferring in/out of my wheelchair. I use velcro straps to attach the loops to my chair as I use an electric chair without handles.
The Lining
The lining is made of fleece. I find it to be extremely warm, my legs feel like I just got out of bed which they never feel that way during the day. I did notice the first couple of times using this, the fluff transferred quite easily onto my clothes. The cover is washable, I’ve washed mine and it survived very nicely!
The bottom of the cover is almost an oval shape with no fleece lining on the inside. This makes sense as this is where your shoes would sit. This obviously would prevent dirt, muddy water etc from dirtying the inside fleece.
The Zip
There is a piece of string sewn into the front of the cover at the top. On the other end, you can tie it to the zip loop. I find the string extremely useful as I don’t have to bend down to my feet area to grab the zip loop to close the cover. The zip is so easy to open, as all you have to do is gently pull apart the cover and the zip will slide down smoothly, meaning once again, no bending down needed. There is a loop on the inside and outside of the zip.
The cover doesn’t come completely apart, in the respect that the zip will open the cover to the bottom but the zip is sewn into the bottom. This way, you never have to start the zip off as it is always ready to go. Hopefully, the image below will show you what I mean.
One thing I will say, however, is that when trying to use the string to pull the zip up, I find it pulls the cover with it which doesn’t allow the zip to close. What I do, is use a foot to hold the cover down at the bottom of the zip while pulling on the string to close the zip. I find this works a treat.
Conclusion
I’ve knocked off one star as the inside pocket is not placed correctly for proper use, something I would have used had I been able to. The pocket seems to be almost around my back and too low down for me to be able to use.
Other than that, I would highly recommend this cover as it is very warm and it will protect your legs in wet weather. Go on, treat yourself, I did lol.
A Nightmare for Accessibility: My Experience at Hilton Metropole Brighton – My daughter and I stayed here for a weekend convention. We were looking forward to staying here as it looked very grand and all the rooms had just been renovated. Unfortunately, this is probably one of the worst hotels for accessibility that I have stayed at!
Lifts were too narrow, no heating around the hotel and the restaurant was not available.Renovations happening and raised thresholds in all the doorways. The list goes on and on! My accessible room only had two accessible features: A wet room and red alarm cords.
We had this weekend booked months in advance as it was a convention for our favourite show (Supernatural) and one of the main stars was going to be there. Excited is very much an understatement of how we were feeling.
The Hotel
Our first issue was parking! We could not use the hotel own’s car park as my van (WAV) would not fit in the underground car park. This meant we could not benefit from the discount offered by the convention organisers. Also, hubby had to take us & pick us up as parking anywhere else was just too expensive! Prices of other car parks are anything from £25 a night!
The entrance to the hotel was very difficult. There was a ramp up to the main revolving door. There was a single door on either side of the revolving doors but these were very narrow. When we arrived, both these doors were locked. My daughter had to go into reception to ask for some help. The first door opened inwards, then directly after that, a second door opens towards you before you enter the foyer. Very difficult to do if you were on your own.
Once inside, first impressions are good. The hotel looks very clean and upmarket. Check-in was easy, I can’t fault the staff in any way, they are all very polite, friendly and helpful. The hotel is advertised as having 340 rooms. When I spoke to the hotel, I was told they have 9 accessible rooms but don’t quote me on that as at the time they were being renovated and things may have changed.
The hotel features advertised:
Connecting Rooms
Digital Key
Spa
Beach
On-site restaurant
Indoor pool
Fitness centre
Pet-friendly rooms
Room service
Meeting rooms
Available accessible features include:
Accessible meeting rooms
Audible alerts in elevators
Bathroom doors at least 32 inches wide
Bedroom doors at least 32 inches wide (812 mm)
Braille elevator
Cutlery with oversized or adapted handles
Digital alarm clock available with sound and a vibrating pad
Disabled parking
Elevator buttons lowered
There’s an Emergency Call Button on the Phone
Emergency pull cords bedside bed & bathroom
Evacuation chair is available to help evacuate a disabled person
Grab bars in the bathroom
Hotel complies with ADA Guidelines
Induction Loop System available at reception & in meeting rooms
Inflatable chair is available to assist in getting in and out of a bath
Large Print Menus
Level or ramp entrance into the building
Lowered emergency evacuation instructions
Public Areas/Facilities accessible for physically challenged
Roll-in Shower
Rooms accessible to wheelchairs (no steps)
Serv support animals welcome
Strobe alarms
Swimming pool hoist for pool access
Vibrating fire alarm available
Visual alarm for hearing impaired/Visual alarms for hearing impaired in hallways & public areas
Wheelchair ramp for lobby/reception access
Some of their accessible features need reassessing, for example. Their disabled parking is not accessible to WAV drivers. The lifts were far too small, ok you can access them but if you’re a wheelchair user, there is only room for you and one other person. Grab bars in the bathroom for me were useless!
Hotel Access
We found the lifts in the foyer to be extremely small in size, there were two of them. Actually we found all the lifts to be very small. It didn’t help they all have floor-to-ceiling blankets on all sides as part of the hotel was still being renovated. My daughter and I just fitted into them! My wheelchair is a small chair (16×16), I don’t know how anyone using the lift in a bigger chair managed it.
Due to the layout of the hotel and our room being on the 2nd floor, this made navigating around the convention very tiring and time-consuming. We would have to take a lift down to the foyer, which at times took forever. Then travel around to the back of the hotel to another lift (which was smaller again) to get upstairs to the mezzanine floor (foyer lifts didn’t go to that floor). Again, this could take forever as all attendees are practically leaving and arriving to/from talks, photo ops, autograph sessions etc. at the same time,
I found the hotel was cold throughout the whole weekend. This played havoc with my chest and circulation in my legs. The only time I was warm was when I was in bed, which I have to say was rather comfy.
There were doorway thresholds throughout the hotel and in our accessible room, which were all raised causing you to bump over each one and some were more violent than others. I have a powered chair and found them difficult and painful.
Our Room
I found the room to be inadequate as far as accessibility goes. I encountered many issues with our room considering the hotel has just had a complete renovation in all its rooms:
Raised thresholds in doorways causing pain in my back
No table at wheelchair height – One large round table at knee height. Also prevented safe transferring on/off the bed
Not enough grab rails – One on each side of the shower seat but quite low, none at a higher level
Grab rails chrome & round – This made them slippery and difficult for me to grab. A silicone cover needs to be added
Dim lighting – The room was very dark – The only lights were the two bedside lamps and a lamp in the corner of the room and one just inside the room door (overhead). Windows didn’t let in much light either
Safe at the top of the wardrobe, too high for a wheelchair user
No clothes rail at all – In what I assumed to be the section of the wardrobe meant for hanging clothes, there was no rail, so you couldn’t hang anything at all
The bedside table blocked access to the wardrobe – The wardrobe was in the corner of the room. There was a bedside table in between that prevented access to the wardrobe
Light switches too high
The room was at the end of the corridor in the corner making it difficult to use the key card and open the heavy door
Room temperature control not accessible by a wheelchair user – This was sat against the wardrobe and as the round table also sat next to the wardrobe, again it prevented access
The bathroom mirror is too high
No finger basin/sink close to the toilet
Staff
I can not fault the hotel staff in any way (shame can’t be said about a certain member of staff from the convention side). Every member of staff I interacted with was polite, friendly and willing to be as much help as possible.
One member of staff from reception (I wish I had got her name), was absolutely lovely as she went out of her way to get me a table I could use in my room. This made all the difference to my being able to function in the room from taking my medication, drinking, eating & brushing my hair.
Hotel Food
Their Salt Room wasn’t open and their advertised on-site restaurant was only open for breakfast. I was told the restaurant was only for special bookings and had to be made 48 hours in advance. The bar serves afternoon tea and all-day casual dining. I personally found the food choices in the bar to be poor and not sufficient enough to be the only place to have a meal all over the weekend. The only other food we had were food huts upstairs when things were happening convention-wise, which served hot dogs & burgers.
I felt the food was very overpriced and what we didn’t know, was that the bar was adding a 12.5% service charge to every order. There was supposedly a sign up at the bar, not helpful for those having table service.
Breakfast was held in the main restaurant. There was any amount of food you could wish for, from toast and cereal to a full English breakfast, all buffet style. Tea, coffee and juices were also available.
Conclusion
The hotel is very clean, with nice enough decor (not my taste). Breakfast was very good but a shame nothing substantial to eat for dinner. Considering this hotel has just had all its rooms renovated, you would think this would give them the perfect opportunity to get accessibility spot on. Instead, it is practically non-existent. I also spent the whole weekend frozen! For these reasons, I would never stay here again!
I’m due to stay in their Birmingham hotel for another convention later this year, I have been assured by other convention goer’s that the Birmingham one is much more accessible and better on the whole. Fingers crossed.
If you would like to work with me don’t hesitate to Contact Me. Feel free to leave a comment below.
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
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
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:
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.
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
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.
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 – 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.
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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’m 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?
On holiday last year with my family, I experienced good and bad attitudes from non-disabled people.
The plus side (in my opinion):
It was at the end of a wonderful ’80s-themed night aboard a ship I was cruising on. (Read my review). We were finishing our drinks after dancing the night away to all the popular 80s music. A lady sitting at the next table asked me “do you mind me asking what is wrong with you?”. My reply, “no, of course not”. I genuinely didn’t mind.
I explained 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. I hadn’t realised how passionate I had become in explaining why I do the things I do. 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?
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), and sat with a cardboard sign saying people could ask him anything about his disability. I’ve 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!
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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.
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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).
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Disabled Passengers Still Fighting For Rights On Busses! – Even after a landmark court case win, disabled people are still fighting for the wheelchair space WE fought to have implemented on buses!! Parents, shoppers are still refusing to make space for wheelchair users when the space is required.
Court Case
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 forward 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.
Ignorance
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!!!
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I Fake my Disability? Lies To Breed Hatred! – 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 it is of no interest to change or enforce.
Faking It!
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 sports/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 a 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 (disabled people) NEED the things we fight for. 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!!
Busses
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:
“Buggy users please make space for wheelchair users”. 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.
Attitude
I hate the fact that most personal attacks shown to disabled people are 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.
When we’re having to have another painful procedure to unblock my catheter that’s caused another urinary infection, or radio-frequency facet joint injections into our spine to try to alleviate pain, I mean, there’s no guarantee they are going to work! Yes! WE ARE FAKING IT!!!!
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.
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.
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
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?
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The Degradation Of Peeing With The Door Open & Staff Loitering! – Is this something you would tolerate flying on your hols? I guess not but that is exactly what disabled people are expected to do! That is what I had to do! Oh, and that is IF you can use the toilet in the first place!
Airline Failures
Flying & disability are not two words airlines want to put together!
I’m due to travel to Las Vegas later in the year and one of my big fears among many is what if I can’t use the toilet! My flight is 11 hours long, I can’t hold myself all that time! I shouldn’t be expected to either but that’s exactly what airlines are expecting us to do. Anyone who has flown will know just how small the toilets are on an aeroplane. How on earth is any wheelchair user expected to use one is beyond me. More importantly, why are airlines still getting away with this blatant discrimination??
While going through my Twitter, I came across another lady who is also flying in the near future and was asking if anyone knew how she could find the dimensions of the toilet on the type of plane she will be flying on. This made me realise I wasn’t the only one needing this kind of info. So, I took this opportunity to find out how one would go about searching the dimensions of an aeroplane’s toilet.
I got in touch with BA who couldn’t help, I contacted other airlines but no luck there either. I even contacted several companies including Boeing themselves who I might add never responded.
It Turns out, airlines don’t actually hold this information. I’m left hoping that a nice member of the cabin crew will take the dimensions and pass them on. So far, trying to research this information has been practically impossible.
Availability
Why is this type of information so hard to source? Why can’t airlines have this info available from their accessibility team? Because they don’t want disabled people flying! That’s why! The way airlines treat disabled customers and their wheelchairs/aids are beyond incompetent and disgusting!!
This information should be readily available.
it should NOT be this difficult to obtain this kind of information directly from the airlines.
Information of this nature should be available from their accessibility team.
Now we all understand the business concept of making money but when you are clearly making changes that exclude sections of society because of said business concept, surely this can be deemed as discrimination? So why, are these airlines allowed to not only continue this behaviour but actually make the situation worse?
Airlines are doing all they can to discourage disabled people from flying!!! Oh and it’s not just disabled people, large people also are affected. People who may need 2 seats instead of 1, (we know how small the seats are too) who also wouldn’t be able to use small toilets. So why is there not more public outrage?? I’m truly baffled!!
Discrimination
As I’m typing up this blog, the lady on Twitter has just got back to me saying she went into the airport and spoke with the airline in person and got the information she needed. Why should she have to do that? Couldn’t the airline have given her the info over email/telephone when she/I first asked? An able-bodied flyer wouldn’t have had to do this!!
Equality Act 2010Says
“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.” Source: Equality Act 2010
So what should have been a simple task, cost that lady time, energy, petrol/travel expenses and frustration! Being disabled is a full-time job, believe me! Disabled people are faced with tasks of this nature DAILY and several times a day. (No wonder I’m always bloody tired!)
The most frustrating aspect of this is, that the majority of the research we have to do is unnecessary. If companies were more inclusive, we wouldn’t have to fight for basic information!
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Privacy & Cookies Policy
Privacy Overview
This website uses cookies to improve your experience while you navigate through the website. Out of these, the cookies that are categorized as necessary are stored on your browser as they are essential for the working of basic functionalities of the website. We also use third-party cookies that help us analyze and understand how you use this website. These cookies will be stored in your browser only with your consent. You also have the option to opt-out of these cookies. But opting out of some of these cookies may affect your browsing experience.
Necessary cookies are absolutely essential for the website to function properly. This category only includes cookies that ensures basic functionalities and security features of the website. These cookies do not store any personal information.
Any cookies that may not be particularly necessary for the website to function and is used specifically to collect user personal data via analytics, ads, other embedded contents are termed as non-necessary cookies. It is mandatory to procure user consent prior to running these cookies on your website.
