Diagnosis, discrimination and why speaking out can feel so risky …

As I’m in the middle of writing a series of posts about social issues in diagnosis, based on my experiences, this is a brief post to share some thoughts in response to a story I found on Twitter earlier this week.

You can read the story here – it concerns an academic who had moved from Bangladesh to Australia in order to work, but whose application for permanent residency had been denied because their son’s diagnosis of “Mild Autism” meant that he was supposedly at risk of being a “burden” to the Australian public health system.

This story is shocking, but it got me thinking about my own experiences, and questioning  why I have become in recent years increasingly reluctant to disclose my diagnosis (or certainly to “make a big deal of it”). I remembered a time several years ago, when I had to leave a job because of “work-related stress” and needed my doctor to sign me off work. The doctor asked if I thought it would be advantageous if he included “Asperger syndrome” on the sick note as this would be likely to open up the protection of the Disability Discrimination Act (DDA), should I need it.

And I should have been able to say without any doubt or fear – Yes! Definitely yes! It should have been that easy, and that safe. There was a time when that would have been my answer, but it wasn’t. Something had changed.

I remember when I was first diagnosed with (physical) disability as a child and I was struggling at school because pain and tiredness were making it really difficult to keep up. My parents and one particular teacher at school began to fight the Local Authority in order for me to get extra support and although this turned into a long and complicated process (which will probably appear in another post), there was such a strong conviction from those around me that I should have the RIGHT to support, so that I could get the very best qualifications I was capable of, without going through pain, extreme fatigue and the risk of further complications to my existing condition in order to achieve those qualifications, that I myself became absolutely convinced that I had that right.

This was around the time when the Disability Discrimination Act came into being, and it felt so empowering to have a law like that as protection – to have rights.

To be clear – what I mean there isn’t that I felt I could/would access those rights at the time. I didn’t really understand the ‘letter of the law’ at all, but I felt that there was a “message” in society that discriminating against someone because they have a disability is not acceptable. That felt powerful, and it felt safe and it felt good.

(And I think it goes to show how law can have an effect in society by shaping discourse – even among those who are unfamiliar with the specific details of a particular Act. It’s like the Act takes on a kind of social life of its own.)

But that’s not how I felt those years later, when my doctor asked what to put on the sick note.

I was worried and ambivalent. Possibly not least because I was thinking at the time that I might want to go on and do some professional training that would require me to prove my “fitness” to do the training and work in that profession – and I was painfully worried that an Asperger diagnosis could be problematic there. This shouldn’t have been the case for someone who had started out in developing her disabled identity with very clear expectations that I could do anything anyone else could do, and that it was the job of society to adapt and enable this to happen.

Somewhere along the line, I’d lost that sense of empowerment, of having rights. I’d experienced so many times in life and in work (in various jobs) where I’d been told that “this is just how it is here” – where the solution offered to me when conferences and events were too overwhelming or too much of a sensory challenge was for me not to go to them (although I wanted to). Where I had the clear message that this is how the world is, and if we offer you support at all, it is to ensure that you can fit into our world and be acceptable and productive.

That wasn’t what it felt like when I was at school. That’s not what I’d thought I was getting with the Disability Discrimination Act. But it was the message I internalized from my own direct Asperger experiences – experiences which were really quite ‘everyday’ and ‘mundane’ – and not at all the kinds of things that would lead someone to resort to the law in order to change things, but which all added up to making me very, very worried about appearing “too autistic”

I think it’s also fair to say that stories from the wider world affected me too –such as those that commented on the chronically low levels of employment for autistic people. I think those discussions set up what felt like a ‘self-fulfilling prophecy’ in that if I struggled at anything, I expected I was going to fail because I had autism, and autistic people are (apparently) difficult to employ.

And having been in that environment for enough years, and been so desperate not to fail, I think I lost the expectation that anything would change around me, and began to feel that if I wanted to manage, I had to be the one to try harder. So I stopped disclosing my diagnosis – or if I did, it came with all kinds of qualifications, like “I have Asperger syndrome, but don’t worry because I’m ever so capable, and I can do this, and that, and I might have weaknesses but they’re made up for by this strength and this strength”.

Apologising for your own existence as an act of self-preservation is quite a long way from empowerment or rights.

So, I’d travelled quite a distance from the sense of empowerment and hope of the very young, physically disabled me. And that’s what makes me feel that although there is real power in the law to drive social change – there’s also a huge amount of work to do in society too, because while people are internalizing the stigma that society throws at them, it’s a huge challenge, (and exhausting, and draining and painful) for those people to try to advocate for themselves, and access in their everyday lives some of that empowerment that the law is able to promise. So, legal rights are great – but there’s got to be something else as well, and that’s the bit that I really want to understand and to be able to achieve for others.

Hopefully then people won’t feel that disclosing their diagnosis (identity) is like walking some kind of tightrope.

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