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."