Lying here in bed feeling rather sick, dizzy, boaty and, well, ill, I’m doing quite a bit of thinking about random stuff. This is just a brain dump.
Accessible buildings are good. Accessible attitudes are better. My old pharmacy had a curved step up to the door. Not ideal if you use a wheelchair. They had a ramp available and showed us how to get their attention if we needed it. If we didn’t want it (sometimes Johan would just lift my chair up the step, and it wasn’t designed for a curved step so was scary) they’d hold the door open. They eventually moved to a new premises when the doctors did, with a proper ramp built in. But I knew I could get in because they wanted me to be able to.
The local supermarket was level access. Automatic door. Apparently accessible. But less accessible than the pharmacy because they’d put temporary displays in the way so I couldn’t get down all the aisles. And an attitude of not caring. They didn’t want me to be able to access it, so I stopped going there.
A small independent clothes shop I love. The shop very small, and there wasn’t quite room for my longer than average wheelchair to get around. They acknowledged me every time I went in, offered to move displays so I could get around, and bring things to me if it was out of reach. Agreed it wasn’t ideal, but the attitude made me feel valued. Their bigger shop was easy to get around, but they were just as friendly.
A large chain clothes shop. They have a lift, and level access. And put the clothes displays even closer together than the independent shop did, so I couldn’t see everything. And indifferent staff.
Years ago, getting the college bus was a friend from my course and occasionally there was a girl with learning disabilities who would get the same bus as she lived in the same general area as we did. My friend treated her the same as he does everyone, with mild friendly insults (not related to her disability). She’d laugh at them, as I did with mine. We had fun. He was told off for treating her as an equal. I still don’t understand why.
Events for the general public that ended up being more accommodating of me with my disabilities than events for those with one of them. Feeling valued as a person, and when I became unable to attend any longer asked if there was anything they could do to make it easier for me. Yet the event for people with specific disability being held in noisy, inaccessible pub that made it difficult for those with that disability, never mind any additional ones.
Since becoming visibly disabled (I’ve always been disabled, it was just “invisible” until the ME required me to start using mobility aids) I’ve been learning more about what accessibility is, and not just for those with mobility issues. Before I used to feel like I was the problem, now I want reasonable adjustments to be made, especially since those adjustments can make things easier for the general public as well.
The most patronising person was someone who provided special needs dentistry. As soon as she discovered I was autistic she stopped talking to me as an adult (as she had been up to then) and started talking to me as if I was a naughty child. And spoke to Johan as if he was my parent, not my partner. Neither of us knew how to respond to that, and it was a relief to be referred somewhere else. They treated me as an adult, even when I appeared odd or couldn’t speak.
There are awesome people who go out of their way to help, but in appropriate ways after checking such help is wanted. And other people who try and force unwanted help on me, even when it’s completely inappropriate. And awesome people who are quietly accepting of difference, making me feel like I’m wanted and worthwhile.
Accepting help is hard. I still want to be as independent as I did before ME. Yet accepting help enables me to have a decent quality of life despite severe illness. Sometimes I still push to do things myself and make myself more ill, because I feel like I should be doing it and don’t deserve help. But I’m slowly learning. My worth is not based on what I do, but on my being a person.
I feel extremely lucky and I’m very grateful for what I have. I have amazing friends. I have great family. I have Johan. Thanks to the benefits system, we have enough money to live on, which also means Johan can be my carer full time. I have access to the NHS, which despite all its faults has kept me alive and is part of the reason I have such a good quality of life now. I have health professionals who visit me at home, medications that help a bit with some of my symptoms, incontinence pads that keep my dignity, and an adjustable bed that helps me not get bed sores.
And yes, I do rate my life as good, despite being in constant pain, feeling terribly ill and completely bedbound. ME is an incredibly sucky illness, but I can do things, even if they’re only small things like roll over in bed or communicate. Deciding to stop fighting being ill and learning to live with it was one of my better decisions. It doesn’t mean I don’t want to get better and I’m hopeful I’ll improve in the future, but my body is trying to keep me alive through everything and if I work with it I think I’ll give it the best chance to keep going and hopefully start working better.
And there are penguins. Everything is better with penguins.