Hello,
Ableism feels relentless at the moment. Just in the past few days, here are the things that disabled people have had to read about, digest, or experience first hand (and these are only the things that have received some attention):
Matthew Parris in the Times arguing that assisted dying should not only be legal but encouraged, specifically to prevent sick people becoming “burdens” on the people they love
Three boys on a wildly successful podcast talking about whether they would continue to date a girl who had been “mangled” in an accident and was now using a wheelchair
The news that the government and NHS have failed to meet their own targets for getting autistic people out of secure mental health units, where many have been held for years simply because no one will provide them the appropriate care
Disabled kids removed from their school photo
I could go on, and on, and on. It never ends. We’re still having the same conversations, still begging for our basic humanity to be recognised, still fighting not to be literally and figuratively erased from society.
The last story in particular makes me want to weep, partly because it’s a little too close to home and partly because they’re just kids. And also because it is 18 years - a full adult lifetime - since 11-year-old Lucy began to be routinely excluded at school, and sometimes it feels like absolutely nothing has changed.
It would be so easy - wouldn’t it? - to despair. Some weeks, I almost do. I could feel, yesterday, the impulse to believe that everything is terrible and trying to change it is pointless. I’ve written in this newsletter before about the attrition-like mental toll of all of this stuff, and feeling like you can never, ever do enough to make anything better. It is heavy; there are, often, tears.
Yet, the older I get, the more I see that the essential truth of disability is its inherently contradictory nature; what my friend, the writer Rebekah Taussig, calls “the both/and of disability”. It’s something I’ve been thinking about, and holding on tight to, a lot this week.
Because for all the rage, despair, sadness, grief, for all the weight of it all, I am happy. Fundamentally, perhaps more deeply and truly than I have ever been before, happy. And what’s more, so are many, many other disabled people. I know because I can see them - working and travelling and dancing and loving and building good, good lives - and, whether I see it through my phone screen or around my kitchen table, I can feel their genuine joy as fully and surely as I can feel my own. There are too many days when it is hard won, too many days when it seems frail and fragile, but perhaps that is what makes it so powerful. Perhaps that is what makes it real.
Both/and. Both/and. As I have said before, the pain and the happiness do nothing to moderate each other. They are not two ends of a scale but, instead, two sides of the same coin; one almost impossible to conceive of without the other.
Living with the two can create a strange sense of being suspended between two realities. I started off the week feeling really cheerful, then I sent some pitches about what had happened over the weekend and felt profoundly sad. Sometimes it’s the very fact of the contrast between the highs and lows that make the lows feel so deep. How is it, one thinks, that the world can be so hostile to our very existence when that existence is so good? The better things are, the more bizarre that hostility feels. You start to question whether either, the good and the bad, can really be as good or as bad as you know them to be. It makes your head spin.
I feel I have to reiterate: there is so much joy. I am so happy. But sometimes the world conspires so that you really have to cling on to that joy with all your strength, have to dig your fingers into it and refuse to let it go. It takes a certain resolve to insist that you will still end the day smiling. But mostly I do. We do. And maybe, while we work so hard for better days ahead, that’s enough to keep us going.
Speak soon,
Lucy
More on the hidden pain and joy of disabled life in my book
Women's lives are shaped by sexism and expectations. Disabled people's lives are shaped by ableism and a complete lack of expectations. But what happens when you're subjected to both sets of rules?
This powerful, honest, hilarious and furious memoir from journalist and advocate Lucy Webster looks at life at the intersection; the struggles, the joys and the unseen realities of being a disabled woman. From navigating the worlds of education and work, dating and friendship; to managing care; contemplating motherhood; and learning to accept your body against a pervasive narrative that it is somehow broken and in need of fixing, The View From Down Here shines a light on what it really means to move through the world as a disabled woman.