For as long as I can remember, I have had an irrational fear of being institutionalised, or more specifically, living in a residential institution or a hospital.
I remember being eight years old, an age where my sense of self-awareness was growing rapidly. I was beginning to sense that I was different from my classmates. They had to tell me that I walked and talked differently, because I’d always assumed that I was no different to them. They didn’t use a typewriter. They played in the yard at lunchtime while I sat watching them. I remember complaining to my parents about it. ‘Count yourself lucky,’ my dad would say, ‘you can do so much more than other people with Cerebral Palsy.’ What the hell is Cerebral Palsy? My mum told me it was a kind of brain damage; that all of the body’s messages come from the brain, and that’s why I did things a little differently to others. That was that.
Then one night, my parents and I watched a documentary on the institutionalisation of people with disabilities during the Second World War and in the 1950s. Horrified does not describe how I felt as I watched how people were locked away by the Nazis, never to be seen again. I heard stories about people who were hidden in their parents’ attics for decades, and I thought: I am lucky. I am lucky.
That year, I would stay in Clochan House, a local respite centre, for the first time. My parents told me it was a sleepover summer camp, and indeed it was lots of fun. We did art, went on trips shopping and to the cinema, and had singsongs in the evenings. Don’t get me wrong, I have very fond memories of my time there, but the first time I stayed there I was convinced I was going to be left there, even though my mother went to great pains to tell me this wasn’t the case. That week, I learned to use a tricycle, which would be my main mode of transport for many years. It gave me independence, liberated me. I would later cycle to school and into town on a trike. I loved freedom. I lived a pretty bog-standard life. I did my Junior and Leaving Cert, went to Uni, got a degree and started working. Nothing remarkable there.
Unfortunately, not everyone agreed. In my school, I became a role model for people with disabilities and got told that I was great. I decided to compete for a place in Trinity, but knew I’d have to work hard, to the point where I made myself sick. ‘Remember that you can only do your best,’ teachers would say, their voiced tinged with concern. ‘Like it or not, you do have a disability so you will face challenges no other student would face.’ I refused to take my eye off the ball, afraid that my future would be full of endless computer courses and day centres. I have nothing against either, but that’s what you’re automatically supposed to do, as a person with a disability. You’re supposed to partake in a pre-formulated narrative. And if you do manage to fight the system and get a degree and a full-time job, then you’re great! Absolutely fantastic altogether! A real example of triumph over adversity! A pre-formulated narrative in itself.
I often think about what it must be like to live in an institution. According to the latest figures, 1,000 young people are living in residential institutions and hospitals. This is outrageous in 2015. Cuts to the adaptation grants, household benefits and Personal Assistant Services have all contributed to this problem. But institutionalisation is not just about your living arrangements. In my view, institutionalisation is spreading into the wider community. It manifests itself when business premises are not accessible for wheelchair using clients. Hate crime is also on the rise, that is, people with disabilities (including myself) being attacked because they are perceived as being vulnerable and ‘easy targets’. In my case, being attacked forced me to leave an affordable council house in Portlaoise and move back into the private rented sector. I felt I had to move back to my home town in order to have emergency contacts in case something happened to me.
I wonder how many more people out there feel held to ransom by circumstances beyond their control.
I wonder how many people are trapped within the four walls of their own homes, day in, day out, because they have to use their Personal Assistant hours for Personal Care or household duties. I wonder how many don’t see anyone else from one day to the next.
I wonder how many people, despite being in their homes, still don’t control what time they get up and go to bed at, or who is going to help them with these tasks.
When I had Alison, I had to start fighting before she was born. Fighting for the help I’d need to care for her. Fighting against the misconceptions of my parenting abilities as a mother with a disability. But most difficult of all was fighting against the negativity that I myself had internalised over the years, mirrored from a society that want to define me, keep me in my place. What if you drop her? the voice would say. What if you can’t look after her properly? What if she resents you for having her? What good can someone like you be to her?
Alison has recently started to ask ‘Why?’ about everything. ‘Why does it rain?’ ‘Why can’t we eat chocolate for dinner?’ I never want her to stop asking why things are the way they are, and as people with disabilities, we should never stop questioning things either. Yes, having to be continually vocal about your rights is exhausting. Yes, sometimes it feels as though the Disability Rights Movement is going around in circles. But if we stop challenging injustice, then not only will we be institutionalised in our own homes, but also in our minds and in our way of thinking.
And this kind of institutionalisation is the scariest and most debilitating of all.
Never stop challenging Sarah. x