A day in life of disability, FT offices

Why disabled people like me give up on careers (In the FT recently, Niamh Ni Hoireabhaird wrote, it gained her a visit to the Prime Minister's office - demonstrating the platform the FT can give you.):

“…When I was 13, I was diagnosed with a rare, progressive neuromuscular condition called Friedreich’s ataxia. My condition means I find it hard to balance and my energy is low, so for the past two years I have relied on a wheelchair. My cognitive ability and aspirations of a career remain intact, despite the obstacles. In England and Wales nearly one in five people has some sort of disability, so the chances are you know somebody in my position — whether their condition is visible or not. So why do so few of us make it through mainstream education and into the world of work? Now I am 21, my attention should be focused on my degree in French and Italian, and my summer internship in London at the Financial Times. Yet, I am struggling with the practical and administrative problems that go with being disabled. Each day brings low-level difficulties that add up to an overwhelming sense of exhaustion and defeat. It’s no wonder so many of us give up on our ambitions….” The article is behind the paywall, but I can send you a copy if you ask nicely or there are free articles available.

It highlights the daily problems of disability, where the world is set up for typicals. This chimes with this blog from an ASD person (see here on how hard the day can be)

 


Thoughts from Autist living in a neurotypical world

A thoughtful blog about how one autistic person (E Price) functions in a neurotypical world. It’s a 15 min read about various aspects of their life and gives a tiny glimpse into the compromises needed.

It starts:

“I’m an Autistic person with a pretty put-together looking life. I always make rent. I have money socked away in savings and investments. I juggle several teaching jobs and do statistical and methodological consulting work. I sometimes find time to write. I have a social life. Except for the occasional noticeable chest crumbs, I present as clean and well-dressed. I manage my stress. I sleep. I eat.

I don’t think I strike the average person as disabled at all. I get work done on time. I show up to things I say I’ll show up to. I don’t show much distress in public. I rarely ask for help. Because psychological disorders are often viewed through a lens of impairment, people might call into question whether I am neuroatypical at all.


Viewing disabilities — and mental disorders — through a lens of impaired functioning is very flawed. The fact that I am functioning does not mean I’m not impaired, or that functioning is not hard. That I can survive, day by day, does not mean that I am thriving, or that my life is as easy as it is for a neurotypical person. And the aspects of my life that are impaired are rarely visible to an outside eye.


We often don’t see a person at their lowest moments — when they are crying and nonverbal, or engaging in self harm, or refusing to eat, or isolating from everyone they love. We can’t always tell if someone is struggling to make it through the work day, or if their sleep and exercise habits have been disrupted. And we don’t know, from the outside, what a person has been forced to sacrifice in order to live a seemingly “functional life”.

A lot of us “function” because we have to.

A lot of disabled or mentally ill people are able to work a job, pay rent, and get by through an elaborate system of compromise and sacrifice. We may have abandoned career paths that were too demanding of our mental energy, or lost relationships that were too socially or emotionally taxing. ...”



“Even with all the immense, unfair advantages that life has given me, life as a neuroatypical person is hard. There are many careers paths I could never successfully follow, and workplaces I could never inhabit. Frustratingly, this is not due to a lack of interest, motivation, or skill, but because I’m not good at existing in a milieu where small talk, meetings, ambient noise, and social politics are abundant.”

A thoughtful read check it out here from E Price.


Autism, David Mitchell Guide

"“So how autistic is your son, exactly?” “Well, his sensory processing is pretty cyan these days. Speech-wise, he’s light magenta. A nice canary yellow when it comes to motor control and memory functions, mind you. Thanks for asking.”"

I've referred to the David Mitchell piece (see here)  previous in looking at his translation of Naoki Higashida's book.   It's worth re-examining in more detail, if you haven't as it is insightful and genuine.

“If you’ve met one person with autism, you’ve met one person with autism.”

"So what are we still getting wrong about autism, and how do we get it right? My answers form a kind of wishlist. First up, is that we stop assuming a communicative impairment denotes a cognitive one. Let’s be wary of assuming that behind autism’s speechlessness lies nothing, or nothing to speak of. Instead, let’s assume that we’re dealing with a mind as keen as our own, and act accordingly. Talk to the person. Don’t worry if there’s no evidence he or she understands. Maybe there is evidence, but you’re not recognising it as such. If the person is there, never discuss them as if they’re not, or as if they’re only there like the coat stand is there. If they don’t notice this courtesy, no harm is done; but if they do, then someone who is often treated as a part-object, part-human, total nuisance gets to feel like a real, valid, card-carrying member of society."

Naoki Higashida. Autistic Voice.

Naoki Higashida’s examination of his autistic world, its hopes  and hazards; its joys and tears; its insights and confusions; Naoki sheds a profound and revelatory light on the autistic mind.

Required reading for autism workers and those interested in the area. Everyone really. These two books The Reason I Jump (which I blog about here) and Fall Down 7 Times Get Up 8 by Naoki Higashida trans David Mitchell & Keiko Yoshida.

"“Why can’t I speak? How come I’m the only one who can’t do it? How I used to agonise over these questions as I watched the other kids doing all kinds of things effortlessly that I’d never be able to manage, not even if I spent my entire life trying.

Every time, I just wanted to break down and cry. I stuck with my regular primary school until fifth grade –age eleven –but it had become so physically and mentally exhausting by that point that I transferred to a school for children with special needs.

My feelings about the move were ambivalent, and remain so. In one sense, it felt like I was running away and, once there, it took me a whole four years before I found a path to my authentic self. On the other hand, until then I had never observed a class in a special needs context and I was surprised by the big differences between classes there and the education I had been used to. While I was conflicted about the ‘special needs’ label, the kindness I encountered from both teachers and students –unthinkable at my previous school –took the edge off my unhappiness. There, I was no longer a ‘problem case’ but just a regular student. Some students were more capable than me while others had more severe challenges, and for the first time I realised how many neuro-atypical children existed in the world.

The school for children with special needs afforded me the freedom to be what I was, but it became less a place to receive an education and more a place to think about my autism. Time passed without my really doing a great deal. The classes were, in theory, tailored to each student’s disability profile, but in practice the teachers had enough on their hands just handling the students’ routine requirements. Some students were ‘long termers’ who had been there since first grade, while others, like me, had transferred in from regular schools because it was thought they were better suited to a school designed for special needs.

Looking back, most of my classmates seemed to enjoy their days at school without any complaints, but I still wonder if they all believed that this was the place they truly belonged? That said, my new school was a place where neuroatypical students were at least free from bullying or ignorant tellings-off. The school taught me the importance of being able to accept assistance and of being respected and valued by others.

I learned that we all have a right to live as a human being should live, and that happiness is attainable whether we have a disability or not. I saw a future path leading first to a high school for students with special needs (to which my new school was attached) and then to a work-centre for people with disabilities. I resolved to increase the range of things I could do without assistance, to work at becoming as independent as possible and, to the best of my ability, to avoid inconveniencing others. I thought that any aspirations outside this future were unrealistic because I was now where I belonged. I consigned any memories of my previous primary school to ancient history.”

There’s more from the BBC on it being book of the week here.  There’s recent (July 2017) article from David Mitchell in the Guardian talkingabout autism and his wish list.

And I have written previously about Naoki’s first published book here.