I was very upset this week to read this story about a primary school in Scotland where parents have been offered versions of their children's class photos without the pictures of certain children, including children with cerebral palsy or additional complex needs. From reading into it, it seems that even the parents of the specific children concerned have been quick to stress that this wasn't the school's fault, but entirely the fault of the external photography company, Tempest Photography.
It's obviously extremely disturbing that in 2024, a photography company still believed that this was acceptable behaviour, and I'm immensely glad that the school, its pupils, the pupils' parents and the media are holding it to account. As bad as this instance was, it would seem to be a one-off, and the fact that it's caused such outrage is, I think, a sign that we're making great strides forward in recognising disabled children and wanting to treat them equally (I think in the past, such an attitude would have been shrugged off, and perhaps children with disabilities would have been barred from taking part in the photography session in the first place).
There is nowadays a lot of talk about positive representation of people with disabilities in the media. I agree with this, although I do believe that this often doesn't translate into creating actual decent services that include them (I've written about this on previous blogs such as this one). Although I have witnessed services for the disabled crumble to pieces under successive neoliberal administrations, I am at least satisfied that regular folk on the ground are keen for their disabled friends and family members to be recognised and treated with respect and dignity. However, I also feel that there is a consistent misunderstanding as to what this means, and I'd like to spend a few moments discussing these misconceptions.
When I was at University, a friend of mine with a severe learning difficulty invited me along to a group that they went to. I went to it, and on the wall was a poster with tips on how to treat people with learning difficulties. The tips included 'Don't bully them', 'Include them' and 'Try to be nice to them'. I can't remember all of them, but I remember finding that poster immensely patronising. I remember talking to one of the people who was running the session about this, and pointing out that there was not one single item on the list that I didn't think was just basic human decency that should be afforded to everyone. She was interested in what I had to say, and I felt she was taking this on board.
It was this instance that made me think that a lot of the ways in which we discuss people with learning difficulties is based in the idea that they should be some kind of exception to the ruthlessness of the world. To be told to 'try to be nice' to a particular person because they're particularly vulnerable suggests that we aren't going to try to be nice to them just because they're a human being. This whole model of disability rights is based around the idea that the world is horrible, as are most of the people in it, so the most we can hope for is that some of the people who are struggling won't have to experience how horrible it is because we'll take a moment to smile at them and pretend that everything is okay. This is not only extremely condescending to anyone who has one of these conditions, but also ignores the fact that lots of disabilities are invisible, everyone can suffer, and everyone deserves a bit of compassion in their life.
As I've written about previously, my partner set up a community group in Abergavenny called The Gathering, which aims to restore some of the services for adults with learning difficulties, disabilities and mental health problems that have been cut in recent years. The group still has a long way to go before it can be truly inclusive to the members of the community who have the most severe needs, but as a new project is absolutely thriving - every time I pop by one of the sessions, there's an enormous group of people there smiling and having a good time. One of the most important things about it is that no one has to qualify for anything to attend. As long as they aren't behaving in an abusive way or anything, anyone is allowed to drop in, by themselves, or with a friend or family member or a carer - they don't have to explain why they're there, or be assessed and judged to be vulnerable in any way. This is a big part of the model of needs that I'd like to see adopted more widely - that of people striving to be there for one another and help one another, without necessarily knowing or understanding why that person needs help. You don't need to be an expert on someone's condition to be able to help them.
In fact, I sometimes think that being an expert on someone's condition can be actively harmful, because that may cause them to be seen as a condition rather than as a person. My partner has also written a novel called Vulnerable Voices, which is inspired by his time working in care (although it is fictitious). The main character in it is a boy in his late teens called Ellis, who finds himself volunteering with the disabled after finishing school mainly because he's not sure what else to do and falls into it by accident. Within the story, Ellis proves far and away the most adept character at understanding what the service-users need and helping them to sort out their lives. It's told in the first person from Ellis' perspective and he himself doesn't particularly realise how exceptional he is at this work - but it's him not realising that makes him so exceptional. Because with his unassuming nature, his lack of self-consciousness and his enjoyment of cheesy pop culture, Ellis is just there, talking to people exactly as he'd talk to anyone else and not thinking twice about it. For the service-users, who perhaps are more used to being othered and talked down to even by those who mean well, this could be a rare moment of normality in their lives. I think this is something that we could all do with remembering - you don't have to know details about someone's life or think that they're a radically different kind of person to you, because they probably aren't, and sometimes a kind word or a thoughtful gesture is enough.
One more thing... we may talk about 'learning difficulties', but it's important to remember that we can't access other people's brains and we don't know their level of understanding. There's a young man whose family is involved in our disability rights campaigns whose family often brings him to the council meetings - he's a wheelchair-user, is unable to talk and has extremely complex needs, and to look at him I think a lot of people's natural assumptions would be that he probably doesn't really understand. And perhaps he doesn't - I don't know him well, and I wouldn't know. But I remember watching him at a meeting once, and thinking, 'What if he does actually understand everything? What if he's able to follow it all, and is frustrated by the fact that he can't communicate this to us?' This is a moment that I've never forgotten, and ever since I've always tried to talk to everyone, no matter who they are, with the expectation that they have just as high a level of understanding as I do, even if they can't show it. Because for all I know they might do, and it's disrespectful to their dignity and intelligence to suggest anything less. Someone once told me that it's ableist to assume that someone else has the same capacity that you yourself do... but I think the opposite is true. I actually believe it's ableist to assume that they don't.