I slept too much on Shabbat (the Sabbath) again. Not a lot else happened, other than reading and Torah study. I still don’t dare risk going to shul. J says hardly anyone is going at the moment. I’m glad I don’t belong to a crazy Haredi (ultra-Orthodox) shul where COVID safety guidelines are ignored. I think there’s quite a bit of that going around in the area though. There was a lot in the Jewish newspapers this week about illegal Haredi weddings with hundreds of unmasked guests in close proximity indoors. It’s pretty provoking, although I don’t think there’s much anyone from outside the Haredi world can do about it. It would only stop if the Haredi world’s leaders (read: rabbis) protested, and maybe not even then.

I tried to work on my novel after Shabbat, but was tired and easily distracted and only managed forty minutes or so.

I should go to bed soon as I’m getting up early in the morning for a Skype coffee and gardening session with PIMOJ. But something has been bothering me over Shabbat. It suddenly occurred to me that I’m probably disabled. I always thought of depression as an illness rather than a disability, something that I could theoretically one day recover from. Even when I was on disability benefits (as I am at the moment, although probably not for much longer), I still did not think of myself as “disabled” as such. But it’s increasingly looking like something keeps me back from full “recovery” (whatever that might mean), the worsening of my mental health as a result of my attempts to change medication and improve my sleep pattern being just the latest incident in a long list of relapses.

In the autistic world, there’s a very vocal school of thought that sees high-functioning autism as a difference, not a disability. I can see where those people are coming from, but I also think a lot depends on the individual’s skillset and life goals. It’s one thing if you are a brilliant pattern-finder with a high-salaried job for an investment bank or accountancy firm; it’s another if you are unable to function in the conventional workplace. Likewise, some people are happy without close friends or a partner, but others want these things, but are not good at finding them.

I feel that I’m not ready to label myself “disabled” and work out what that would mean for me, especially given my history of giving myself negative labels. I may have to decide soon though. I should have the final part of my autism assessment soon (NHS permitting…). If I do get a definite diagnosis, that will push me down the path of thinking of myself as disabled, especially if I can claim some kind of help in the workplace under disability law. On the other hand, if I don’t get diagnosed… I’m not sure what that would mean at all. I know I’ve written before about feeling that I’m either autistic or “useless.” I know it’s not that black and white in reality, but it feels like that. I would feel like I’ve been some kind fraudster pretending to be disabled as part of some kind of scam for all the years I’ve been calling myself autistic (although I’ve never had any autism benefits, either monetary or in the workplace, except for one job interview where I was allowed to see the questions in advance).

I want to talk to PIMOJ about this, but I can’t face having the discussion via text or even video and who knows when we will meet in person again?

16 thoughts on “Disabled?

  1. I agree that context may be important as to whether autism qualifies as a disability. But I’m still reluctant to consider myself disabled. My current job suits me very well, but since my diagnosis almost a year ago, I have been more proactive about asking to have certain needs accommodated. For example, when I make a presentation, I do not handle interruptions very well, so before I begin, I request that everyone hold their questions until the end of my presentation, after which they can ask anything they want. But that is not necessarily accommodating a disability — it could also be about respecting a cultural difference in communication style. Where it might be helpful to consider it a disability is when your requests are repeatedly NOT being respected. Then, a clinical diagnosis can give you some leverage.

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  2. Would being thought of(and thinking of yourself) as disabled be freeing or would it be limiting? Our expectations of those with disabilities are different; are they also lower? There are many “in spite of” people. So and so accomplished this, in spite of x. I’m pondering whether that’s positive or negative.

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    1. I don’t know how much is feeling lesser and how much is about labelling myself – wanting a label that “explains” me, but not one that confines me, maybe. There is definitely a feeling of, “Oh, my life’s not bad enough to consider myself disabled similar to the way you’ve written about feeling you don’t deserve help.

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      1. Hugs. I definitely relate to wanting a name to “explain” what’s going on, but not wanting to be defined by it as well. I’d say I wish we all had universal basic income because we all deserve to have decent lives.

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  3. Just as autism is a spectrum, so too is disability, which in any case is a vague, overused and ill-defined term. And this applies to clinical depression and anxiety as well. Disability is not a very helpful term to use – particularly when applied to certain (but not all) mental health issues and certainly when applied to neuro developmental disorders like autism which do not necessarily impact on intellectual function. It is for this reason that nowadays, there is a move away from focusing on the specific nature of the disability or diagnosis, and more on the way it affects you. This is how the new PIP differs from DLA for example. You can have a very severe disability e.g. be totally blind – and yet still have a successful career as a musician, for example. For others blindness may mean the end of a successful career. And then there are conditions which are intermittent – depression can be one of these. You can have long periods of remission. People may have a more difficult time coping when they have more than one medical condition e.g. you suffer from clinical depression as well as ASD. Finally, and most importantly, there is a huge element of subjectivity when it comes to assessing disability based on mental health or developmental disorders like autism. It ends up being how well you can convince someone else of how severely your condition affects you. So, yes I don’t think it is helpful to perceive yourself as disabled – rather someone with a lifelong developmental condition (high functioning autism) who also has to deal with related mental health issues. In this way you acknowledge that you have more difficulties to overcome to reach your goals, but this does not mean your goals are all unattainable, or that things cannot improve over time.

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  4. Feel free to ignore or delete this if it is unhelpful, insensitive, or offensive. I do not mean to offend, but I admit that the autism / disability spectrum and the correct language to use when speaking about it is not something I know very much about, so I may say something inadvertently offensive. Apologies in advance.

    I do believe that you get to decide how to use / accord importance to the identifying labels of yourself. I don’t mean that in the obnoxious motivational “you can be/do anything if you try hard enough” crap way that often is not true and does not recognize real limits/challenges. I mean, if you find the diagnosis / “disabled” label (and I’m not sure these are synonymous terms) helpful, eg. for better understanding yourself or for getting necessary accommodations, you can lean in to it, but if you find the diagnosis / “disabled” label limiting or distressing, you are also allow to de-emphasize its meaning for your identity.

    Could you call PIMOJ if text/video/in person aren’t options?

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  5. I wrestled with the label of “disabled” for quite some time. Many of my friends do not see me as normal. Some of my friends and many family members think I am faking it and just milking the system so I don’t have to work…and then one of my many issues pop up. And the doubters turn a blind eye for months at a time.
    It wasn’t until recently that I started viewing everything from a different mindset. It comes down to this. I started looking at the numerous disabilities as industrial accidents. And the symptoms as my superpowers. I learned that a seizure can be very fun to use as an ability. I stopped being embarrassed about my disabilities and started treating them as special abilities.
    Seizures can lead people to a place of understanding and support, and they freak Norms out. Acute amnesia has shown friends what it’s like to wake up and not know them and is this a friendship worth pursuing. An episode after Depersonalization-derealization kicked in showed a group of Norms where my heart lies.

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