Blogging Against Disablism Day 2013: Living with Invisible Disability

This post is part of Blogging Against Disablism Day 2013 (#BADD2013) [External Link]. If you liked this or want to see more posts on this subject, please follow the link!


What’s An Invisible Disability?

Basically, any mental health issue, disorder or syndrome that is not obvious when you first clap eyes or ears on a person. This can range through depression, Attention Deficit Disorder and my own (probable) Asperger’s Syndrome. They don’t all have the same cause – some are about how our brains are wired from birth, some develop due to stresses in life, and some… well, it’s hard to say, really. No-one really knows. Some of these traits appear to be hereditary, some appear to be solely a response to environment, but in the main we just don’t have that much of a clue. If we’re generalising as I always do.

What Does It Mean?

Autism spectrum disorders may run in my paternal family. I have two nephews (who I have to admit I have never met) who register on the spectrum and I have been diagnosed – although I am not far along the scale. From personal descriptions I got while doing family history research, I could probably make a guess at who else (usually men) was likely to be on the scale in the last three or four generations.

For me, Asperger’s means being anxious about anything slightly different, being chatty (it’s how I dispel nerves, by emptying my head at any- and everybody), and sometimes just being a blubbering mess. Throwing strops when things didn’t go my way never seemed to work so I learnt not to do it. However, there are times when things can get so bad, so stressful, that all I want to do is stand around and jump and flap. I can’t read facial expressions very well, being able to see someone’s mouth makes very little difference to how well I understand their words (although no-one sounds clear over the phone), and I tend to accept people at their spoken word. While I’m “improving” – learning to cope – I will never be quite as good at it as, say, my sister.

However, I’ll bet none of the things I’ve said about me are so far along the scale that there are plenty of people we can consider “neurotypical” (i.e. “normal”) out there who do much the same.

From the other side of the family, there seems to be depression related mental illness. To the best of my knowledge, my mother never had depression but at least three out of her four siblings have had their moments, as has my sister. There has been what is often politely referred to as “odd behaviour” in earlier generations.

For some of them, this has meant some form of substance abuse. For others, it’s meant anti-depressants. There have been panic attacks, there have been black moods that stretch into the bleak future, there have been times when it feels like everything is against them and they don’t count for anything. Usually hidden behind a bright smile and a helpful attitude so the insensitive among us (i.e. me) don’t notice the bad stuff.

So this is what an invisible disability means: it means looking like “normal” but having something different on the inside. Which can result in disgust, derision, or destruction if the “normal” people realise it. Or, at least, that’s what we fear.

Is It Real?

In the sense of “does it really make a difference?” or “does it matter?”… well, it depends on the individual. Just like everything else. Let me give you an example from my working life that doesn’t immediately relate.

I am just over a metre and a half tall and I blow away in a strong wind. I have a colleague who is over two metres tall and doesn’t blow away in a strong wind. We are both physically healthy and normal. Anyone who does the physical side of my, and his, job needs to be capable of walking long distances over uneven ground, potentially carrying quite a physical load. We have only recently sorted out issues that come out of my being unable to carry as much as my colleague. There are issues that remain, though, like I have difficulty accessing monitoring points that he can step up to – and he has difficulty getting his hands into monitoring points that I can get both of my arms in.

I am in much the same place on the autism spectrum. Of course, to me it makes no difference because I was essentially the same person both before and after diagnosis. To others… Well, very few people would know if I didn’t mention it and there are plenty of people who know who disagree with the diagnosis. I’m lucky. While I can understand Miserandino’s Spoon Theory [External Link], I have a similar if not the same number of spoons as my colleagues.

This is probably the main issue with any “hidden” disability. It’s hard for people who have a typical or larger spoon budget to grasp why it might be harder for someone else. It’s not uncommon, for example, to hear people complaining about stress at work, about how heavy the workload is. But they will often then have difficulty understanding how someone else in the same or similar role in the same company is taking long-term sick leave while they can carry on (and struggling with the extra workload thanks to missing colleague). Because if they can cope with the stress levels, why can’t the colleague?

Yet, having had to take time off work due to stress(es) – and knowing others in the same boat – I can tell you than in most instances the problem is real. I have been in a position where the idea of going to work makes me want to cry and feel sick to my stomach. The weekend still filled me with excitement – which faded rapidly within half an hour after I realised that I only had however many hours before I was due back at work again. I am only vaguely back on track and still have moments of “Oh shit, I have to go back again.”

Basically, whether you agree with a diagnosis or not, the important thing is that this hidden difference is real. Apply Spoon Theory to everyone you meet, accept that they might not have the same budget of spoons (or tokens, or energy points) as you and, if they’ve been brave enough to share the name of their difference with you, understand that it’s about explaining why they have less spoons because they feel like an absolute sodding failure when they can’t keep up with you. And not because they want to be special.

(For that matter, the same goes for anyone who has an obvious difference.)

Is It Catching?

There is a stigma attached to having weaknesses (such as failing under stress, so to speak) and there is always the fear of the different – which can lead to people being beaten up and broken for the crime of having “passed” as “normal” when taken to an extreme. It’s not surprising then that people don’t like to mention what’s hidden to strangers.

My reveals are usually due to people making cracks about Finn not being all there. My response is something to the effect of “neither is his owner”. The more severe their comments about “brain damage”, the more harsh I am in my own reveal. Sometimes my own behaviour leads to a reveal. I have once had the following conversation:

“Are you retarded?”

“Yes but I prefer ‘autistic’. What’s your excuse?”

*Aggressive person hurries away*

As you can tell, I wasn’t being factually correct in my response but it was amusing.

Basically, people don’t know how to handle dealing with an invisible difference. I’ve been lucky not to come across someone so aggressive (for want of a better word) that they honestly felt the difference shouldn’t exist and that they were going to do it themselves. However, when I tell people I don’t know I’m an Aspie, there is often a moment of recoil that even I can see. It can be confusion (“I don’t know what that is”), surprise (“I would never have known [that you weren’t normal]”), or occasionally dismissal (“I don’t want to deal with this”). Only in the last instance do people consider it polite not to verbalise their response and keep it to themselves. Usually.

The recoil doesn’t always lead to running away but people can become uncomfortable around me. They don’t know how to deal with the difference, even if they’ve known me for some time, and plenty of people assume that it might be something catching. While behavioural habits maybe catching – in the sense that we pick things up from each other – mental health doesn’t work like that. But so many people respond as if it is.

So, when dealing with a mental health reveal remember: it isn’t catching and the best thing you can do is continue to treat the individual with the same respectful, polite and friendly manner you treat everyone. (Assuming we’re all perfect and manage that.)

But You’ll Get Over It, Right?

Yeah… Well…

Yes and no. I have heard plenty of people diagnosed, or self-diagnosed, with Asperger’s say that they “grew out of it” or similar. To a certain extent, those of us who aren’t far along the spectrum – who are essentially neurotypical to many mental health practitioners – are just late developers. We learn our coping strategies and, either through luck or good help, end up somewhere in “normal” society.

For a good example of what I mean, you might want to go look at Amanda Harrington’s blog, Crazy Girl In An Aspie World [External Link]. Amanda has found a place in the world that works for her (after several years of trying) that allows her to be independent. She’s self-employed, doesn’t enjoy everything she does (who does?) but appears to be content, or working on making it better. I seem to manage a little better being employed, although I’ve found my career height and have little interest in progressing further. I’ve tried self-employed (and it was nice to be out of the politics) but wasn’t so good with the paperwork.

But we’re both Aspie success stories. There are people who can’t got to the supermarket (my limit is about half an hour, then I buy whatever I’m holding and run) because other people are there. There are people who can’t go to work for someone else for one day, because other people are there and they don’t understand what’s expected of them (pesky unwritten rules, and all that). These people are not just going to “get over it”.

On the not handling stress front, nobody just “gets over it”. That’s why people have holidays. Or, if they don’t have time to go on holiday, get sent off work by their doctors. Going straight back in to the old situation, though, only builds the stress back up again. Some people can cope with this and some can’t. As a rule of thumb, I’d suggest that anyone that’s been sent off by the doctor probably shouldn’t be thrown back into the deep end of exactly the same situation when they come back to work. (Not that I’m bitter. Honest.) While back-to-work talks and interviews are mandatory, there is a tendency to assume that small tweaks get to the root of the problem, rather than looking at the bigger picture – like work culture and team dynamics. But I digress.

I suspect part of the issue is that “recovery” from mental illness is about getting the people with a difference to slot into what is expected of “normal” people. However, news flash, there’s not really any such things as “normal”. There is “average” and “typical” when dealing with large numbers but we’re not identical lifeforms with exactly the same brain and body (see my example of monitoring work above). Sometimes people don’t just get better in a way you understand. Sometimes they just don’t recover to a point you can accept as “normal”. At least not without adjustments by the majority – not all of which can be “normal”, “typical” or “average”, assuming a standard distribution.

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