A pro disabled thread - telling stories of strength

Fabulous idea for a thread! I’ve worked full time since I was 16, now 52. Started in a bakery counter and finished Senior Management.

I have had Crohns since my early 20’s and arthritis, pernicious anemia and anxiety and depression from 19 till now. I now have Cancer and have exhausted all treatment options so have limited time left.

Since my terminal diagnosis and giving up work honestly I see where the term work to lives comes from. Luckily I was given some time to make certain changes that I probably would have missed out on. Nothing major or interesting to anyone but me but I’m so, so, grateful to have this time knowing I’m dying.

Really the only thing I’m pissed off about is never having claimed a benefit a day in my life and now I’m getting them all it seems only for to be taken all away! ah well, them the breaks.

DH is snoring beside me and the dawn chorus is just warming up, mrs blackbird particularly busy this morning. Takes the edge off the pain a little bit still too much pain to sleep last night.

Am I strong? Am I brave? Doesn’t matter, I don’t have any say in the matter so it doesn’t bother me if people say this- it obviously makes them feel better saying this so who am I to take that away from them? Don’t sweat the small stuff, know who your friends are and have fun, that’s about the sum of it!

Yeah I don't want to be called strong. In my experience it means wow that's shit I'm not actually going to help you though. Also the "I couldn't do what you do" re disabled kids I agree with pp what else can we do really?

I just want to be normal. I want my children to get the education every other child can access yet is denied many disabled children because school "can't meet needs". I want to pay off my mortgage snd into a pension not be worried about my old age.

Literally only positive I can think of is the peer support and advice. I've had no help for my disabled child really from services but other parents of kids like him have given good advice on bits and pieces. Same with my own problems can't get information out of drs but anonymous online questions about managing hygiene and changing clothes etc when physically limited has been life changing with links to aids. I think disabled people are really empathetic and considerate when asked for advice or they see you struggling

I agree witnessing your child’s bravery and determination in the face of fairly awful obstacles can be truly inspiring. I tell my dc that everyone in the country has collected money to help people like him because they know he can’t make money himself yet (it’s vanishingly unlikely he ever will). When he asked me “Why?” I told him it’s because we all love him so much and that he makes so many things better. I believe that.

Well, I'm unapologetic that I consider my 8yo dd both strong and determined (if not always resilient) and, what's more, I have learned so much from her as a result. The way NT people take things for granted - I've had to think like her and have a much better understanding of, and relationship with, her as a result.

On World Book Day 2 years ago, I was pretending that taking your child to the park in her Harry Potter Onesie was entirely normal. As it was WBD, we fitted in. But in truth, it was the first day in several weeks that I'd managed to get out of the house with her. She was in the midst of school avoidance. She wasn't even able to get dressed, such was the level of shutdown. Some mornings she lay in bed naked, not able to even come down for breakfast. She gave up once loved activities, wasn't able to attend her friends' parties. She was just 6, bless her.

I can't tell you how far she's come and how proud I am of her. We were late for school today due to clothing related issues (numerous and complex in their nature). She slammed her hands on her desk repeatedly and once would have turned that on me. But we've both learned. I retreated calmly, gave her time. We worked together when she was calm, she spoke and I listened, understood. We spoke about reasonable adjustments and 'red lines' (I.e. what she absolutely could not/ would not be able to do, and likewise what I could not/ would not do). 15 minutes later she was dressed, with some adjustments, and happy and ready to go. The concepts of teamwork, negotiation and problem solving do not come easily to her. She's come such a long way and she has my heart and soul.

I do wish that life was not so difficult for her, of course I do. Her difficulites break my heart on an almost daily basis. But my word, she's the most determined individual I think I've ever met. She's relentless, and I hugely admire that in her.

I think the endless benefit bashing and jealous nonsense that’s being posted reflects what we are hearing in papers and from politicians. There’s very little understanding of the actual costs of having a disability or of what NOT providing support might look like.
In real life there are many really kind and helpful people and a fair few arseholes.

Exactly this. I’ve raised 2 disabled children and am diagnosed with a disability myself. Ffs the number of people that tell me “I couldn’t do what you do”. wtf would you do then??? You’d give your children away? None of this was a conscious choice, it was all thrust upon me and, while I may be swimming now, there are plenty of times when I sunk.

Being called “strong” is a huge trigger for me. I don’t want to be strong, I wanted a life that was much easier. I wanted an easier life, full of opportunities, for my children and when people say I’m strong, as if it’s some sort of magical characteristic that I was born with what they’re really saying is that I don’t need (their) support or help.

Was expecting this comeback.

However you still do not get to tell other PWD inspo porn crap if they say it's not real for them.

What a lovely idea, after a challenging morning so far with dd (8) who is ND. I shall return later to read replies and add my own!

Are you familiar with the concept of inspo porn? I think you might benefit from reading about it and then you could stop being condescending and patronising with your 'interesting perspective' shite.

I think the PWD know more than you do about themselves.

I'm disabled and I feel lazy, ashamed, think I'm not making enough of an effort, that I should try harder.

I have about 16 conditions, physical and mental health.

I do some volunteering from home every day, but the actual weight of being useless is becoming quite crippling.

I have CPTSD, OCD, chronic pain and dyspraxia. I’m also morbidly obese thanks to a combo of PCOS and medication to manage my mood. I’ve probably cost the NHS a fortune over the last few years. Up until a year ago I was on highest care and mobility.

I’ve got a decent job, I’ve got good friends, I think I’m mostly OK - but I’m also a bit of a prat; I will do anything sitting on my arse if I can, I spend far too much money and I’m absolutely my own worst enemy.

It’s difficult when your own mind is battling again you 24/7, I’m struggling to keep my house clean right now as my brain is just too bloody tired after work to even begin to deal with it - so my house is currently manky.

Both my mum and my younger sibling have complex needs (dementia, epilepsy, personality disorder, mild LD; autism, epilepsy, mental health issues, learning disability) and struggled a lot growing up. Sister still lives a very difficult now as she isn’t entitled to full PIP despite needing supported living, very difficult. Both come under that bracket of having hardly ever worked (in mums case) or never worked (sister) which makes life much harder too.

I'm the most uninspiring disabled person around! Wheelchair user or walking sticks depending on how I'm doing on any given day so I definitely 'stick out'. I'm not heroic, brave, determined or an inspiration to anyone....I'm just a rather knackered 47 Yr old single Mum navigating bringing up a teenager whilst having a knackered body. Like everyone else on this planet I can be a total twat some days..cos I'm human, not some sainted entity some able bodied people want/,need to view us as 🤷‍♀️

Whilst I've always been a bit 'wonky' & had my first full knee reconstruction at 14, I didn't start using mobility aids until my late 20s and up until I was 42 I had a successful & decently paid career as an Assistant Headteacher, now I live of my teachers pension & higher rate PIP- life can flip in the blink of an eye, and despite the pain, the stares, the 'helpful' comments etc.. I still try & find beauty & peace in the mundane everyday-ness. We are still here, getting to live these lives, maybe just not the lives we imagined for ourselves xx

Hello, I have POTS, EDS and ADHD
My daughter has ASD, ADHD, learning disability, sensory processing disorder and a language disorder
I know exactly how you feel about wishing you could swap the DLA for a child that didn't have to struggle 💔

Ah my people!

I’m ‘newly disabled’ with a child with complex needs. I’ve been diagnosed this year with ADHD and am currently undergoing investigations for POTS and CFS. My son has ASD/ADHD/FASD/Dyspraxia and attachment disorder. I’d gladly swap the £560 a month in DLA for an easier life for my child.

The thought behind this was sweet, but imo a huge part of the problem with society is that lots of people vilify people for being disabled, and create a narrative that they're useless scroungers who need to get on with it. But on the flip side there's this other narrative that disabled people are resilient, patient, strong beings who can do absolutely no wrong, and should be praised just for existing.

One narrative has unrealistic expectations of disabled people (the expectation being stop being disabled)

But your narrative is actually quite infantilising. You need to unpack why you see disabled people as inspirational for just... Living.

I'm not the spokesperson for disabled people BUT I'm neurodivergent with chronic illnesses, I have a disabled child and I have a disabled husband. They're not inspirational they just need a few adjustments sometimes.

I have a t shirt by Jennifer smells (can't find her on insta at the moment) that says uninspiring disabled person.

Because jfc I'm sick of people calling me (a wheelchair user with AuDHD and a host of things wrong) inspirational or a hero or whatever.

And on the other hand, being spoken to or about in the context of expecting too many changes around me like I'm the centre of the universe essentially.

I can't stand sticking out and I do so, really blatantly. If I could not have to stand out it would be great. One of the times I'm standing out and being watched (which I can't cope with at all) is when trying to getting in and out of buildings, and on/ off public transport.

So yeah, wishing people could at least just do the little easy things like unlocking the second double door so a wheelchair user can open it themselves instead of having to bang on a door or shout for someone, would be grand.

Because it's never just that one thing. It can be lots of very little bit disabling things in just one day. I'm sick of of the crippling anxiety I have over leaving the house.

I am not a second class citizen.

This. I am disabled and neither resilient or strong. I don't think this rhetoric that disabled people have to be resilient and strong is particularly helpful. A thread that is supportive and understanding of the challenges disabled people face would be great though.