A.I.T.A?

Kerry Fender by Kerry Fender Additional Needs

Kerry Fender

Kerry Fender

Down’s Syndrome, my family and me – one mum’s account of family life with an extra chromosome.

Local authority school transport is not granted according to a child’s disability, but according to the distance they have to travel to get from home to the nearest school that is appropriate for their needs.

Freddie’s new High school is just over two miles away from our house, so we don’t qualify. But that shouldn’t be a problem, should it – I mean, in this day and age, who doesn’t have access to a vehicle?

Well, me, for a start. I work from home, so I couldn’t justify the expense of running a car even if I could drive one. Which I can’t. I’ve been on a provisional licence for thirty years. My first driving instructor threatened to take the headrest off my seat and smack me across the back of my skull every time I made a mistake (he was a friend of my husband as well as my instructor). Subsequent ones have worn fixed grins and plastic pants. I now see it as my civic duty to stay off the road rather than wantonly endanger innocent members of the public with my spectacularly incompetent driving. Somebody once commented to me that being unable to drive was ‘tantamount to being disabled’. When I gave them my honest and heartfelt response to this, they got a bit upset.

Apparently, I’m an a***hole.

Never mind, it’s a nice walk to the school. Or at least it is for me. Freddie can’t actually walk that far, even if accompanied by an adult, due to hypotonia (which makes walking inefficient and, therefore, more tiring) and severe joint hypermobility in his ankles that causes pain and fatigue during movement and in the long term can lead to the development of osteoarthritis and other musculoskeletal conditions.

He wears orthotic devices to help stabilize the joint, but they are not the most comfortable things to walk in – with tight straps at the ankle and mid-calf. Once Freddie starts to become uncomfortable, whether due to the discomfort of wearing leg braces or to the pain and fatigue that comes with hypermobility, he quickly gets grumpy and frustrated, which leads, inevitably, to him refusing to cooperate or move a step further in any direction.

The solution – buy a lightweight wheelchair. Freddie and I set off each morning on foot, pushing the chair between us. We walk about halfway like this, which means Freddie gets some exercise, which is good for his general wellbeing, then, when the fatigue and achiness start getting a bit too much, he hops in the chair and I push him the rest of the way. It suits us even if it causes a few raised eyebrows in town, when a child who can apparently walk is allowed to get into a wheelchair.

Freddie’s school is located in a very nice, leafy suburb inhabited largely by members of the professions (the only ones who can afford to live here), a few hundred yards away from a mainstream primary. Placed at strategic points around the two entrances to the primary school are several fluorescent yellow A boards urging parents to ‘Think Before You Park’ and to ‘Respect Our Neighbours’ and ‘Think Child Safety’.

By and large, parents parking their cars near the school obey these signs diligently, allowing plenty of room for the vehicles of local residents to pass easily along the road – by parking as far over on the pavement as possible, leaving just enough room for children and parents on foot to squeeze past along the tree-lined grass verges.

Am I the a***hole here, for resenting how their consideration for others completely excludes my child and me, how it fails utterly to respect our needs or my child’s safety?

Am I the a***hole for wanting to bang on their windows as they watch me impassively, engines running, as I struggle to manoeuvre the wheelchair in between their car and a thumping great tree whose gnarled old roots have rutted and buckled grass and concrete alike causing our wheels to get stuck in the fissures, or jounce suddenly sideways?

Am I the a***hole for mouthing swear-words at them behind my mask because, day after day, they are parked in exactly the same spot again, even though, day after day, they sit and watch me as, unable to get past them on the pavement, I have to push my child carefully out into a road where I cannot easily see any traffic coming towards me?

Society is unequivocal in its answer.

Yes!

Yes, I AM the a***hole for expecting others to spend time and energy considering the needs of those who are, after all, ‘only’ a minority.

Yes, I AM the a***hole for expecting my child, and others like him, to be given ‘special privileges’ like access and safety (which other people take for granted as an automatic right).

Yes, for openly voicing a complaint, I am a bitter and twisted a***hole soured by ‘misfortune’; and if I should ever dare to point out to some conveniently conventional citizen that they too could be just one illness or accident away from becoming a member of the Disabled minority whose needs they see no reason to consider, then I am the biggest, nastiest, most evil a***hole of all, for wishing it on them.

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