The Life and Death Brigade of The Special Needs Bubble

There’s an episode of House where he says to Cameron that someone so upset by death either has no experience of it or too much of it. As someone who grew up disabled, attended a special needs school followed by a mainstream secondary school that was the only wheelchair accessible mainstream school in the borough, and a family history of incurable illnesses, I feel that I for one have too much experience of it.

My first experience of death was when I was five years old. An older girl I knew enough to be friendly to, as friendly as a five year old in the nursery can be with a seventeen year old who was in the eldest class of the school and had a completely different condition, passed away in the middle of the night, in the middle of a school week. People said it was so sudden, and I remember the teachers and classroom assistants (helpers they were called, back then) huddled by the headteacher’s office, crying.

Her name was Sally, and here’s something that I’ve never told anyone before. She knew she was dying, and she told me so.

Sally was quite poorly but she wasn’t meant to go so soon. I know this because I overheard the teachers, the classroom helpers and the dinner ladies saying so. I never thought to correct them in their assumptions. I never liked speaking out of turn for fear of upsetting anyone, and as a five year old, I just assumed that I must have been wrong if adults had a different opinion to me.

But Sally, this girl who struggled to breathe, who could barely self propel, who needed a helper with her at all times and had to stay in the small benched square away from the playground and most of the other children (which is how we became acquainted), turned to me, a five year old, and said “Something bad’s going to happen, I can feel it. I think I’m going to die, and I can’t stop it.” She leaned over to me, whilst our shared helper was away due to being spread thin between looking after us and being on general playground duty, and grounded out those words.

She died a week later.

And with the wisdom of a five year old, I always wondered, why is it she knew but everyone else was surprised?

Twenty-something years later, I understand why. We see but we don’t observe, and we cling onto what we want to see instead of seeing the real picture. I’ve lost friends to Duchenne Muscular Dystrophy, complications relating to severe Cerebal Palsy, complications relating to Osteogenesis Imperfecta, Cystic Fibrosis, and fatal heart conditions, and I’ve lost several family members to various types of cancers. You get to a point in every single case where you just know that it’s the point of no return for them, this is a death sentence, and that no matter what drugs they take, no matter what surgery they have, it’ll only prolong or stave off their suffering for a short while, not cure them completely.

And yet every single time these loved ones lose the battle and their lives, there’s still that underlying shock, surprise, disbelief, as if we weren’t expecting it.

I recently realised that most of the children I went to that special needs school with have since passed away, some didn’t even see passed their teenage years. This is something that most people don’t even have to think about until they’re in their 70s, but I can name a handful of adults right now who don’t have many people to share their childhood memories with. Hell, their teenage memories with, because there weren’t just children at this school. This school went from the age of 3 and a half to eighteen.

And the way the school worked, I hate to be cheesy, but you knew every single one of the other students and you were automatically friends. I felt differently about that concept when I was ten, and a newcomer picked on me daily about how different I was to everyone else (too normal for a special needs school, not normal enough for a normal school, smallest of those who could walk). I certainly wasn’t friends with that girl. And maybe some of the older students felt they weren’t really friends with the younger students, but the point was, that school was such a bubble, you didn’t have much choice than to be friends with them, or to at least tolerate them nicely. I personally had friends between the age gaps of three years younger than me to seven years older than me, and my peers in terms of intelligence were the older students. If they didn’t like me, they certainly didn’t show it.

The way the social life of a disabled person was back then, the people you knew in school, you’d see everywhere else you went to too, because you all went to the same places. Not me, because not having a car and being quite poor, my parents could never afford for me to join in and never saw the point of inquiring alternative solutions, but it was the case generally.

If someone went to this special needs school, they went to the same social clubs outside of school. They went to the same children’s hospital, to the same clinics, and saw the same doctors. They saw the physiotherapist from school who also worked in the hospital. The school hosted physiotherapy and hydrotherapy sessions during the holidays. There were special needs sports events that I attended as a seven year old until I was fourteen years old, and students from the two schools I attended made up the whole team.

If you didn’t know someone in this disabled circle, you knew someone who did. It’s one of those stereotypes about disabled people that, in this case, is actually quite true.

So it is very sad to slowly see and hear about this circle that I was once close to, getting smaller and smaller as time goes by. It will continue to get smaller. The unavoidable fact about attending a special needs school and getting to know other disabled children and teenagers, regardless of condition, is that many of them have conditions and illnesses that steal them from this world a lot sooner than others.

Almost ten years ago, I lost a dearly beloved friend of mine who I shared a childhood with, who knew the friends that I knew despite us not actually attending this same school at the same time. The history we shared has decayed every year, when another one of our mutual friends join her in the unknown sanctuary from the pain of disabled life. She lived to see her own classmates pass away, and to add to the loss, lost her brother to cancer in 2002.

It’s hard to think about the fact that wherever she is, she’s no longer suffering even though I and many others still miss her so much. That wherever she is, at least she’s not subjected to any of the indignities befalling disabled people across the country right now, thanks to this government and their so called welfare reform. And the same goes for everyone else. It is hard to think of what they’d be suffering through if they were alive today and depending on the benefits that are getting snatched away from other people with the same conditions as them.

So I’d like to say to Sally, Gemma, Vicky, Owen, Jenna, Mike, Kevin, Laura S, Peter, Danielle, Laura D and everyone else who is no longer with us but was part of our special needs circle:

You were a part of history, and you will always live on in our memories for as long we ourselves can survive.

~AFJ~

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