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Am I really disabled? Internalised able-ism - insight shared and sought about beliefs about ones own and others capability :-)

Phased

Hi All

Recently I've been struggling to analyse what "reasonable adjustments" for my late diagnosed ASD level 1 are appropriate for me from a work setting.

This has spun off and intertwines with what reasonable adjustments I ought to make simply in my daily life.

One of the lovely people here recently shared a website with advice on moving beyond burnout.

Autistic Burnout Recovery: How to Build a Recovery Plan - Neurodivergent Insights

In this I encountered the term Internalised ablism for the first time.

A quick definition is

"Internalized ableism (sometimes discussed as internalized stigma) refers to the process by which individuals absorb negative societal messages about their own identity. For autistic people, this can mean adopting beliefs that autism is inherently “wrong” or “deficient”—ideas that stem from a society that often values neurotypical traits over neurodiversity."

I straight away found this a very useful concept to apply to my analysis of just why it is so difficult for me to recognise and make adjustments to get on better with being autistic.

I'm one to check sources and evidence if I can - albeit these days have grown to trust general AI to do it for me.  So this is what chatGPT says about research evidence for it in those with autism:

"Summary

In summary, evidence from both quantitative and qualitative studies supports the existence of internalized ableism among autistic individuals. This internalization of negative societal messages is linked to:

  • Increased mental health challenges (e.g., anxiety, depression).
  • Behavioral outcomes such as camouflaging, which, while sometimes adaptive, can be psychologically costly.
  • Challenges in forming a positive identity as autistic individuals navigate a world that often holds devaluing views of neurodiversity.

As research in this area continues to develop, many experts stress the importance of shifting societal narratives—from deficit-based models to those that affirm and celebrate neurodiversity—to help reduce the internalized stigma experienced by autistic people."

For me this is about recognising and acting rationally upon internalised beliefs and prejudices that form my expectations about myself as being more capable than someone with a lifelong developmental disability such as autism can reasonably be expected to be in certain respects.

In the day since coming across this my personal "deep dive" has thrown up some dark aspects of my reaction to disability in others that I have had in the past and do still arise today.  I remain ashamed about this.  The first time I encountered the term "neurodiverse" for example I had a pretty hostile personal reaction to it...   This sort of attitude extends to the extent that my career has been about helping people "get better" from disability.  To perhaps be nice to myself on this I am at least aware and sensitive enough to work on balancing the bias out when I see it in myself about others.  Oh, and some disabilities it is possible to get better from and with :-)

So much of this seems to be about social advantage or disadvantage - including how people might "game" the system to take unfair advantage of others in society for selfish goals.

How much society is taking from us and truthfully how able one is to give to seems to be linked to capability pretty deeply.

How best for society to optimise capability for everyone (does it really want to) ?

I'm coming around to the realisation that pragmatically society is not adequately equipped or prepared to do the work for me in working out what reasonable adjustments I need - no matter how reasonable it might be to expect it to be.  

I will need to self advocate for this - it's just so damn tricky...

Thoughts anyone?

All the best :-)

Parents

  • Disability is defined in the Equality Act 2010 in purely negative terms:

    "...a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities."

    My reading of this is that autism can "officially" be a disability, but it depends on the level of effect on you personally.

    Effect is cumulative, so while needing to wear earplugs in public spaces probably wouldn't be disabling, if you add to it not being able to use busy public transport or go to large busy supermarkets or attend a family birthday party without significant distress or fatigue, then it probably would be classed as a disability.

    I'm disabled and am at ease with that "label". I have bipolar, tinnitus, migraines and am now diagnosed with autism. I don't think my migraines are frequent enough now to be a qualifying disability, but the others stand as they all have significant effects.

    Disabled is a negative sounding word and the definition is negatively phrased too. However, I just see it as part of me. I need to take into account my "disability" limits when I plan or do things, but that's just reality for me and I see no point trying to deny it in my case.

    Other people will see it differently and may identify differently too and that's fine as well. It's an individual thing.

  • in reply to Tears_before_bedtime

    From the DSM one of the criteria for diagnosis that has to be met is "Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.".   So for me that meets what's quoted above from the equality act.

    What always worries me around this debate - is that it could easily be used to take away what limited support and protections there are.  Circumstances change.  For some people, with their current circumstances/environment everything may feel fine and they say they're not disabled.  Those circumstances or the environment changes and it may be people suddenly need that support or protection.  

    There is a stigma around the word disabled you're right and to me that's one of the things we need to help change.

  • in reply to Joe

    I think you're right that it's all about circumstances and context. If your normal daily activities don't include going to a big supermarket or commuting on a busy train then the fact you'd find doing so really difficult doesn't figure into your assessment of your own ability/disability.

    My understanding of The Act is that there is guidance on what "counts" as disabled that doesn't rely on your personal assessment and you can be classified and treated as having rights based on disability even if you don't think you are disabled.

    I'm not legally trained and this isn't advice though, just my personal understanding!

Reply
  • in reply to Joe

    I think you're right that it's all about circumstances and context. If your normal daily activities don't include going to a big supermarket or commuting on a busy train then the fact you'd find doing so really difficult doesn't figure into your assessment of your own ability/disability.

    My understanding of The Act is that there is guidance on what "counts" as disabled that doesn't rely on your personal assessment and you can be classified and treated as having rights based on disability even if you don't think you are disabled.

    I'm not legally trained and this isn't advice though, just my personal understanding!

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