For a long time I have suspected that the overwhelm that comes with being independent as a disabled person played a key role in my mum’s suicide. There are many reasons I think this: Her first attempt was around when my parents separated; one of the last things my dad said to her was about moving out; her note said ‘life is too much’ – a phrase that both haunts me and resonates with me deeply.
I knew that her pain was a big part of her reason – she said so in her note. I knew that trying to manage her neuropathic pain and life independently was not going to be easy, but I didn’t know just how badly she was being let down by the systems supposed to support her.
I am writing this post because it feels like my duty. I am writing this post to bring awareness to a reality many have no experience of. I am writing this piece because the grief and the anger sparked by the information I have acquired are tearing me apart and so I can only imagine what it did to her.
Writing this, while it’s all so fresh, is incredibly difficult, but I feel called upon, compelled even, to share her story.
Two weeks before my mum died, on the first day of my brother’s visit, she was telling us about the difficulty she was having trying to get her new wheelchair approved. Her current chair was 10+ years old and no longer fit for purpose. Most importantly, her needs had changed. A frozen shoulder had left her unable to self-propel and therefore unable to be independent with her current mobility aid. The footplate was also broken and taped together. She felt trapped. I did not know these things then, but I did know my mum needed a new wheelchair. I had sent her things I saw other wheelchair users using that seemed to improve their mobility and independence. My mum was getting older and an electric wheelchair or scooter-type aid seemed like a natural choice. When she briefly lived in Singapore she told me about her collapsable electric scooter and it sounded perfect. Coming back to her broken piece of crap in the UK must have felt like a step back and a half.
She was due an upgrade and (as far as I understand) she was assessed about a year before she died and told to choose a light folding wheelchair. She picked out a powerchair, which are generally more versatile than electric wheelchairs, and found a reputable dealer as she’d been instructed, but the NHS was refusing to fund it because it’s not crash tested – despite funding it in the past. My mum doesn’t sit in her chair to drive or travel so she didn’t see why this was an issue as she was able to transfer to standard car seats. While my mum was a wheelchair user, she could stand, she could walk, and for the last decade she had been the one walking to the boot and lowering her wheelchair with the hoist it was fitted with. She was the one who loaded it back in. It wasn’t always easy, but it would have been much easier with the chair she’d picked out as it collapsed more efficiently. Her car was not even a car that would let her sit in her wheelchair because there just wasn’t room. It didn’t have an adaptation like that. Still, the NHS was insistent that it was crash tested.
My mum wanted to fight this on principle. She could have afforded the wheelchair herself, but why should she have to? These things aren’t cheap. She wasn’t working and her pension was not what it could have been so why should she spend her limited income in a time of such uncertainty on something she should get as standard. It was the NHS, after all, that left the pieces of titanium that caused her nerve damage inside her (not that it should make a difference, but more to highlight the sense of injustice of it all). She said, in that conversation two weeks before she died, that she wanted to make the point/set precedent for those who couldn’t just afford it – and I admired that.
A couple of weeks ago I managed to get into my mum’s laptop. I didn’t expect to find much on there. I had been locked out for weeks before I managed to get in. Accessing a deceased person’s technology is a whole discussion in itself that I will save for another post. Long story short, we were not all in agreement. But the way I saw it is that I was the one having to live in this reality and as much as I wanted to respect her privacy I also desperately wanted answers. She did leave us passwords and, while they didn’t work in the end, my dad pointed out that suggested she was okay with us looking. I didn’t expect to find much, but I wanted to know if there was anything to find. I wanted to know what she got in her ASDA and Deliveroo orders. I wanted to know if there were signs. I wanted to know why.
It wasn’t long before I found out what was in those orders because my mum helpfully used Apple Mail so everything was there waiting for me – though it needed re-authorising to look at anything recent. Everything up until her laptop was taken by the police on November was there. She got hair dye in her ASDA order, which she’d amended the previous day. She got multiple boxes of hair dye, which doesn’t suggest to me that she had a definite plan to end her life. She ordered alcohol too which went against my theory about her trying to get sober but also didn’t surprise me. It did tell me that there were at least two unopened bottles we, or rather I, hadn’t found. That just left the question of what she got from Deliveroo: Thai Rice Club. My mum didn’t always eat proper meals, so it did strike me as a little odd that she ordered food for herself. I am glad she did. It explained the chilli I found on her floor. It explained why for some reason that’s what my dad thought she got on Deliveroo (maybe he’d seen packaging in the bins or something on a bank statement). I am glad she got a good meal before she left, though I suspect it may have served another purpose in her fate.
I didn’t expect what I found next. At the top of her sent box was an email to the county’s wheelchair service sent two days before she died.
I cannot live without a wheelchair so I choose not to live!
Hope you’re proud of yourselves
This was a very clear indicator of what was on my mum’s mind in the days before she took her own life. While there is evidence over the following days to suggest it was not a set plan from the time she sent this email, I don’t think those feelings – and the helplessness and hopelessness that accompanied them – were ever far beneath the surface, laying in wait to be triggered another time. I know my mum fell the day she sent that email, something I suspect was a result of increased alcohol consumption due to emotional distress.I know that on the next day she was originally planning to cook on the day after – the day she died – before she changed her mind and her ASDA order. I know that the hair dye that was left in the order could mean she didn’t decide not to cook because she decided to kill herself instead, but I also know it could mean nothing at all. It could suggest her expectation to live beyond that day, it could be a safety net (if she was planning) incase she did change her mind, but it could also have been just something to keep in so the order wasn’t just alcohol.
I don’t know whether my mum planned it, but I do know that most suicides aren’t planned. They are often moments of intense distress where death feels like the only way out. I don’t think my mum started the day expecting (or planning) to die, but I do wonder if my dad’s comment about moving out brought it all up again. I don’t think my dad’s comment alone caused things to play out how they did (though I do question the appropriateness of its timing given we were in the middle of a family visit), but I suspect it may have triggered the resurgence of thoughts that were already bubbling below the surface, pushed down from the days prior. I don’t think it was immediate as my mum’s response later over text was that she’d buy him out of the current house, but I think as the afternoon wore on the reality of what she was facing sank in. Being disabled is hard enough, being in pain too is even worse, being both while trying to be independent and everything requires an exhausting fight to get your needs met is one hurdle too many.
I cannot imagine the anxiety my mum must have been experiencing feeling an urgency to be independent but facing barriers at the first hurdle – the basic need of a mobility aid.
To quote my mum
Bureaucracy and red tape as usual disabling the disabled
My mum sent the email two days before her suicide after months of back and forth and, from the looks of the thread, being ignored. Not only did she not get the wheelchair she desperately needed, she didn’t even get a response, nor a welfare check. Not a thought, it seems, despite the service knowing she was vulnerable.
Going through the thread it seemed like it had been a while since my mum had gotten a response at all. She had asked my dad for help, something I suspect would have taken her a lot of strength to do, as the whole thing was making her more and more distressed – and emotional distress often exacerbated her physical pain. Her case was escalated to the national team in early September – 2 months before she died. She was told the service would ask the wheelchair panel, but after hearing nothing she chased it up in early October. Organisations such as Back Up Trust were trying to help, with a speaker from the Wheelchair Alliance suggesting that a simple disclaimer should be all that is needed for her to get the wheelchair she’d chosen (and tried out I believe). My mum emailed them on her birthday – a month before she died – suggesting this and got no response. She got no response to any of it – not even an email to say they were still waiting to hear back. No hope, no help, nothing.
You ever get the feeling the rug is pulled out from under your barely functional legs?
It seems like her plan was to fight it, hence the escalation to a national team and wheelchair panel (which may be the same thing thinking about it) and the things she said two weeks before she died. Yet she heard nothing for weeks it seems. Why after 2 months was there no sign of any progress? It may be that, in the end, nothing was going to persuade the NHS to sign off on the wheelchair my mum wanted, but at that time she had chosen to dispute it. They could have respected that. They could have respected her. They could have chased things up too or at least responded when she chased things up. They could have recognised her needs, her vulnerability. I know the NHS is stretched and strained, but how does that justify the absolute lack of response, be it via email, a mental health team, or a welfare check, to her email suggesting suicidal intent?
It feels somewhat reminiscent to the fear of refusing a certain type of therapy that is harmful to you and being offered nothing more. It’s their way or the high way. Submit or suffer.
She knew the system, she knew the NHS, if she is struggling to get her needs met, what hope is there for anyone else? What hope is there for those that don’t have the knowledge, time or capacity to fight? More importantly, why do disabled people have to put in so much of their already often limited energy to get the support they deserve? It’s not just an NHS thing. I remember going to a capacity to work assessment (or something like that) with her not long after the operation that left her partially paraplegic and watching them ask my mum about her ability to walk different distances (way before she was really capable of hobbling around) and get her to do simple maths (not something that comes easily when you’re doped up on painkillers). This was despite them having all the paperwork to explain my mum’s condition, which I think most people would understand would prevent her from working at least at that time given the recency of her surgery. These assessments have long been just a humiliating ritual involving someone who knows little about your conditions doing everything they can to deny your needs and limitations. It’s the same with PIP. My mum knew it all too well.
Do I have the right to independent mobility or will some paper pusher decide my fate because of some stupid rule?
We have emailed the wheelchair service, but unsurprisingly there has been no response so far. It makes me wonder how many other people have been in the same position and maybe have not even known it. I would not know half of what I know now had I not gained access to her laptop and emails, and not everybody has that option. How many people are taking their own lives because they cannot bear to keep chasing and waiting for the support they deserve? Because they can’t keep running in exhausting circles trying to appease a system that might just let them down anyway? Because they have no updates and therefore no hope?
We like to think it’s 2024 and we are all woke and great, but we are really really not. Consider how many shop and restaurants you know that have a little step which would prevent independent entry for wheelchair and mobility scooter users. Consider how many tube stations don’t facilitate step-free access. Consider how many reception desks are just a wildly inaccessible height. Accessibility isn’t just about wheelchair users though so now consider all the other types of disability and consider their accessibility. Accessibility isn’t one size fits all and I know it will take time before society is reaches its accessibility potential and is accessible for all (and even then it may not be accommodating). But if we cannot address the glaringly obvious barriers to accessibility then I don’t have too much hope for much else. To me, one of those glaringly obvious barriers is the insane amount of advocacy, energy and determination disabled people need to get through the various bureaucratic barriers and mountains of paperwork to get their basic needs met at home such as obtaining an appropriate wheelchair. Or financial support for the added costs associated with being disabled. It’s not a case of one or the other at all, but if we cannot remove the barriers to existing at home for a disabled person, there is no respite from the inaccessibility of society. There is no one size fits all for accessibility and support, but there is one barrier that affects all. Accessibility itself is hugely inaccessible.
Anyone can become disabled at any time. It could affect you – today, next year, or next decade. There will be no warning. It also might not affect you ever in any way, but that’s not a good enough reason to remain silent. Don’t wait, like I did, to have a personal connection to disability to consider accessibility. Don’t leave to disabled people to challenge accessibility issues. You don’t have to be an abled knight, but you don’t have to be ignorant either. It’s not about pity, it’s about understanding, empathy, compassion. It’s about equality. It’s about justice. Don’t be the guy who only starts respecting women or caring about the challenges they face when he has a daughter – he is not a nice guy.
Being disabled is hard enough, being disabled in today’s society is another battle entirely. The fight to get your needs met is relentless. This goes beyond accessibility needs; the need for social support, to be respected, to be valued etc are all valid needs that aren’t always met for disabled people. That said, most of the battle to get one’s needs met is still fighting for the bare minimum and it shows. The diversity and intersectionality of disability often feels overlooked. While it is increasingly talked about, the impact of disability on mental health is still often overlooked. As is the impact on mental health on physical conditions. Some impact of disability on mental health might be unavoidable in some cases such as with a life changing injury etc., but it’s not hard to see how the hurdles and hardships our society lays out in front of people would also contribute. It’s not hard to see how existing can become exhausting when your time and energy is taxed at a higher rate even though you have less of it to start with. It’s not hard to see how that could lead to a sense of hopelessness.
I am angry at actions, or lack of, of the NHS and services they fund. I am angry at the state of the NHS and social care. I am angry at society for its ignorance and its systems for their failures. I am angry at the judgement my mum received time and time again from people who didn’t understand and never tried to. I am angry at the dismissal and ignorance that disabled people know all too well. I am angry at the eugenic-like survival of the fittest rhetoric some people come out with that they would never dream of thinking if it was there mum. I am angry that disabled people are often forgotten and ignored like they are a problem that will disappear. I am angry it is still a battle to get the bare minimum. I am angry at the way disabled people are often treated as second-class citizens and no one bats an eye. I am angry at that society can adapt to acknowledge, accept and accommodate so many different types of people (which is great), but rarely makes the effort for disabled people. I am angry that everyone screams inclusivity, but the people who have been screaming it for the longest are often not included.
Disability pride month shouldn’t be needed as a reminder to commit ourselves to creating more inclusive and accessible societies, not that its existence is even acknowledged outside disabled communities, but without it I fear it would only be easier for disabled people to fade into the background for some people (not that social media algorithms seem to let them get far from it as it is). I just wish it wasn’t always on the marginalised community to create awareness and educate people on issues they face. I kinda wish corporations got involved in disability pride if it would get people talking about making work environments more accessible – heck even retail environments – and raised funding for grassroots organisations, but I know it may come at a cost to disabled voices in the end. On the other hand, it would shoulder some of the wait of educating others. It would put still bring more attention to the issues, which I don’t think is a bad thing given the current state of things.
I’d like to think a change in government would change things, but sadly I am not convinced. There are an estimated 16 million disabled people in the UK – about 24% of the population – and yet they are often a last thought. In reality, with medical and technological advancements allowing us live (and live longer) with various conditions, injuries and other afflictions, disability of all kinds is only likely to become more prevalent.
When will you start caring?
Update: It turns out they didn’t ignore my mum’s last email. On the next working day, the day my mum died, it was forwarded to the service manager who for some reason didn’t read up the email thread to find her mobile number so called the wheelchair place who called her to ask her about sharing it. He then called her. Twice. And based on her demeanour conversations he, seemingly alone, made the decision not to raise a safeguarding alert and this was done seemingly without following their own safeguarding procedures laid out in their policy, which states that safeguarding concerns and the the decision of whether or not an alert was raised should be logged, and that the safeguarding team should be supporting staff with the decisions. These issues have been put to them but we are yet to receive a response. However, I wanted to add this update for thoroughness and fairness – though I question how thoroughly they read up on the details given they couldn’t find her mobile number in the same thread.
I’m sure you cannot imagine the added anguish of knowing someone read the email, managed to get hold of and speak to her, and then didn’t raise a safeguarding alert – only for her to end up taking her own life hours later, if that. I’m sure it will get its own post eventually, but for now I thought it best to wait until I had more information before I wade in those feelings.