It’s been a while since my last post “Shame” and I wish I could say that everything is now fine. But I can’t, it’s not and my shame is still there and still hard and it’s christalising into anger.
I was brave and I asked to be referred to Wheelchair Services because my wheelchair isn’t suitable for the amount of use I need it for – it’s a day trip wheelchair not an every day wheelchair. I explained to a doctor that I’m rapidly losing the ability to use my legs – I can’t stand unaided, I can’t stand or walk for very long or very far and my legs get exhausted easily. I can’t walk to the shop – but I can wheel that distance. I can’t stand and chat with stall holders at the market but I can sit in my chair and then wheel myself to another stall. My arms still work okay – not as well as a healthy person’s arms but well enough to use to get me places. I just need a lighter, properly fitted, properly set up chair. One with the back wheels set further forwards, with no armrests, with a rigid frame and air-filled tires – a chair designed for someone who needs to use it all the time.
A chair that would allow me to leave the house without my boyfriend.
The doctor wasn’t interested in why my legs are losing apparent strength, why they fatigue so easily, why I find it so suddenly and increasingly difficult to move my legs at all. He actually literally laughed because that’s not explained by my current diagnosis at all.
Then he messed up my wheelchair referral and asked them for a powerchair to use outside only (which they don’t provide) when I want to be assessed for an active user wheelchair for both outside and inside my house.
So now I have to be brave AGAIN and go back AGAIN to tell another doctor to write me a new referral to get what I need and I still might not get it.
I’m getting my social care reassessed at the moment too as I can’t carry on with agency carers turning up late or never and leaving halfway through calls.
I won’t write much about this process as it’s ongoing and I can’t be sure they don’t read my blog but I ended up in tears and acutely mentally ill after my last meeting with social services after having to justify needing things like “I need freshly prepared food because ready meals could literally kill me and also nobody wants to be forced to rely on ready meals” and “No I won’t let anyone into my house without seeing ID” and “I want to choose people to help me get dressed / wash / go out instead of just hoping I get sent someone compatible”.
And that’s going to eventually sort itself out and I will sooner or later have a good wheelchair that suits my needs. I have to believe it will be sorted but:
Everything I need to live an independent and fulfilled life exists. The assistive technologies I need exist. The kind of personal assistants I need exist. Heck, the kind of adaptive housing I might need exists.
And I’m stuck at home, on the sofa in my pjs because other people, who don’t know me, who don’t have to live with the consequences, who are also trying to find the most “cost-effective” solution get to decide for me what I can have.
My body isn’t keeping me here.
My body isn’t deciding whether or not to look into the possible causes of these frightening new symptoms, the doctor is.
My body isn’t deciding whether or not I deserve to go outside when I want to, the NHS is.
My body isn’t deciding how clean and fed and safe I should be, social services is.
My body isn’t determining where I can go, what I can do – society is making that decision for me every day with every staircase and every narrow doorway and every unfilled pothole.
The tech to make my life independent exists and I only don’t have it cos I can’t afford it.
I daydream about what my life would be like if I had the things I need – a decent wheelchair, enough wheelchair skills training to be confident out and about, adapted clothing and/or devices that help to put clothes on, a walk-in shower with a seat, a profiling bed, an adapted bike, a wheelchair friendly house to live in, an assistance dog, a PA or two to help me stay organised, regular physiotherapy, regular mental health therapy, AAC apps and visual time table apps to help avoid meltdowns, headphones for outside and a sensory room to retreat to when I need to ground myself…
Even HALF of these would be a massive improvement to my quality of life and maybe I’ll eventually get most of them.
But there’s nothing I can do except continue to beg the health and social care systems for the help I need and no guarantees that I’ll ever get it.
I’m not unique. This is standard. This is how disabled people live in the UK.