I’m going to discuss ableism a bit in this post so a content warning applies for that. Please also pull me up on language used incorrectly. A spoiler warning also applies if you don’t want to see anything about the Strictly results last night!
Occasionally I have dreams where I am able to walk unaided. I walk along the pavement or the house, only realising that isn’t possible when I wake up, or sometimes in the dream itself. It’s quite a distressing moment – this time last year I was disappointed with myself if I didn’t get 12500 steps in, and thought nothing of the hour’s walk from my flat to town. Now, I can’t walk without a frame and I use the wheelchair when I’m out. I probably struggle to get even 100 steps in. I know not to compare myself to others, but it’s comparisons to me that get me disappointed. I’ve been lucky so far in terms of side effects, in that the tumour has mostly affected things like balance and co-ordination – things that I was never good at anyway! My cognitive ability seems to be functioning well, though I’ve been very tired (which will hopefully pass soon – if only because it’s very frustrating not having the energy to do anything!) I also managed to get PIP much more easily than most people I know – on one level, I do need it and am entitled to it, but so does everyone else I know who has struggled to ‘prove’ their entitlement, which is a fairly big indictment of the benefits system in the UK.
The fact I can’t really walk without using mobility aids and bought a wheelchair of my own last week has meant I’ve been doing a lot of thinking about accessibility and disability. A disclaimer first of all – I’m very aware in talking about this that there are many different types of accessibility, and that many people do not necessarily define as disabled (and there’s probably people would say that I’m not, though that’s maybe a discussion for another time)
I’m ashamed to admit that I didn’t really pay attention to accessibility ‘before’ – whereas a few months ago, I barely noticed one or two steps up to a shop, now I notice every cobble and every bump. This probably says a lot about attitudes to disability in general! My other two main bugbears involve the word ‘inspiration’ (which I’ve been hearing too much of today and yesterday since Jonnie left Strictly!) and people thinking that only elderly people need mobility aids…
The image above is a jumper designed by Bree Mae, who always has interesting things to say on Twitter. The four pictures represent a person in a wheelchair, someone speaking sign language, neurodivergence, and a blind or partially sighted person with an assistance dog. It does well at showing that disability is not just something ‘seen’ – especially with variable conditions or chronic illness and pain. I know TfL have introduced a badge saying ‘please offer me a seat’ – unfortunately I’ve also heard of cases of people being rude to badge holders and refusing to give up their seat because ‘you don’t look disabled’… But if you live in London or somewhere else that has a similar scheme, please pay attention to it!
Accessibility really matters. I’ve been church hopping recently, while mum is on sabbatical.
I think the main things I’ve learned from this church hopping so far are
a) it’s always worth looking things up first! Whether that’s toilets, places to eat or whether there are slopes, knowing what’s going on certainly helps me. Cobbles also feel a lot worse in a chair than when you’re walking on them, and the number of places that have slopes or very small steps without me having realised before is ridiculous.
b) Sometimes you can only find things don’t work when you get there! We’ve been lucky so far but I probably wouldn’t even think about parking, for example. Mostly this is because I never learnt to drive (and I’m not supposed to now anyway!)
c) As always, nothing about us without us. If you don’t consult disabled people, you should. It was lovely to see someone in a wheelchair taking up the collection one Sunday. Asking people (or accepting their offers of help) to be on rotas for reading or sidespersonning or making tea after the service, or event, or just employ disabled people if they are able to work, and disabled employment is a whole different issue and discussion which is often abusive and exploitative, where it exists at all! Although, of course, it’s always important to remember not all disability is visible and not everyone will disclose their disability.
Much of this can be extrapolated beyond churches and is just good general advice, to be honest! I’ve mostly been very impressed with the accessibility – especially considering churches are often not the kind of building you think would be accessible, due to legal reasons and historical significance, but we haven’t had to change plans yet! In fact, the only place we had to change plans was at a service station on the way to Manchester – there was no lift and no way of getting across the bridge without several stairs. If I’d known this in advance I could have brought my stick, or we could have gone to a different services (which is what we did in the end) – I finally received a reply from them today which apologised for the inconvenience and said I could have asked a member of staff to go across and get me something, which I didn’t personally find a very helpful solution…
The next two paragraphs will contain some discussion of sexual assault and harassment. I also briefly mention infertility so you may want to avoid that too. There won’t be any further mention after that so please do skip this if you feel the need to or stop reading.
One thing I’ve become quite aware of is that since using a wheelchair no one has said things to me of a sexual nature or harassed me. This had happened quite often before – over half the times I went outside, and I’m sure many women experience a lot worse and a lot more – though less so when I was using a stick than when I was walking entirely unaided.
There are a number of perspectives I could take on this. It may be partially due to the fact that most of the time at least one of my parents is with me! I also don’t want to complain that I’m *not* being harassed. Some of the responses have come close to that, even saying it explicitly, and I’m sure most of us have heard similar things said.
I think the hard thing is that often disabled people are denied their humanity by being denied sexuality. As infertility is one of the side effects of the treatment, it’s already been something I’ve thought about, though not being able to have biological children doesn’t really bother me for a multitude of reasons which may or may not form a future blog post. Of course, asexuality is a very real thing and many people are asexual, so I don’t believe that sexuality is integral to humanity or the human condition, and as someone who is so single she regularly laughs when medical professionals ask if I could be pregnant, I certainly don’t believe that sexual expression or experience is necessary for identity (I’m no less bisexual for never having been with another woman, for example). But sometimes when you are disabled, people either think they have a right to ask very personal questions or assume that you *can’t* do anything sexual. It’s those assumptions (that everything you do is public, and that you are infantilised) that are rooted in ableist attitudes. There must have been things written on the intersection between disability and queerness too, and Twitter is a great resource for things like this.
The above image is from Twitter and Annie Segarra, and is a purple t-shirt saying ‘Queer and Disabled’, with a white image of a person in a wheelchair and a rainbow behind a cloud.