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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
  • Phased said:
    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 have to agree.

    The term reasonable adjustments brings me out in a cold sweat. Asking for 'reasonable adjustments' has effectively ended my career. I have been told that it is no longer safe for role to continue, therefore, I must be redeployed. Blatantly ignoring the law and hiding behind generalised terms like 'needs of the service' to reject what I and others has spent a great deal of time and cost to ask for in the first place.

    I wish you all the best in advocating for your specific adjustments. Just get everything in writing as your nice boss might turn out like mine!

  • in reply to Mr T

    Thanks  I'm saddened and also a little alarmed by your experience.

    I hope that you have found other ways to feel good about things beyond career.

    I feel awkward about asking however, if possible, please could you elaborate upon what justification for your being in your job was not safe?  Safe for you?

    I have been trough several "support meetings" where I have raised verbally and then in writing the issues that contributed to my burnout.  I am now at the point of realising that I have to write out what the reasonable adjustments are and these are ones that are valid for all my colleagues in my opinion - not just for me.  "needs of the service" means the personal needs of employees are trampled over in my experience... 

    I had "reasonable adjustments" before that were not adhered to and where not fit for task - legal route re: same remains open.

    Hmmm... nice boss? I've known some... capable boss?  I've known some...  An individual that combines both these - they are pretty rare.

    Am heading back to writing stuff down now...

    Thanks again

  • in reply to Phased

    I don't know myself what this means but I have my manager saying this on a recorded teams call. I have at least one last hurdle to navigate at the end of this month before grievance and tribunal, hopefully.

  • in reply to Mr T

    Yes, concur with problems in working out what adjustments are necessary. 

    I propose that the "internalised ableism" meaning that I wasn't able to appreciate the relative difficulties experienced.  

    This may have also contributed/been correlated the development or exacerbation of alexithymia (mind blindness) for me.

    In contexts where ableism is prevalent, the resulting chronic stress and negative self-perceptions may further impair one’s ability to access and articulate emotions, thereby contributing to alexithymia.

    I am inclined to think it easier to observe and make inferences about how someone else is feeling and what may be triggering it than I am about myself in areas of long established difficulty.  I believe that is likely the case often in wider society and not just autism.  For this reason I believe specialist autism support is what is required to identify the adjustments required.

    I think that perhaps the tribunal route is more demanding upon a variety of personal resources for all concerned - including time and commitment.  Perhaps it also signals as unions not being able to help their member to resolve the problem and they remain engaged to do so even when evidence suggests they are not.

    In respect of wanting to "get even" with employer this has become a similar obsession with me too.  In a sense it has become emblematic of struggles in a wider sense - albeit one that is meant to be formally regulated and supported by employment and human rights legislation.

    In respect of it becoming an unhealthy obsession I sense the irony there.

    In my case I am turning it into a wider issue where my case is emblematic of how the employer is behaving to others as well.  Making it not just a personal struggle helps me feel better about.

    Best Wishes

Reply
  • in reply to Mr T

    Yes, concur with problems in working out what adjustments are necessary. 

    I propose that the "internalised ableism" meaning that I wasn't able to appreciate the relative difficulties experienced.  

    This may have also contributed/been correlated the development or exacerbation of alexithymia (mind blindness) for me.

    In contexts where ableism is prevalent, the resulting chronic stress and negative self-perceptions may further impair one’s ability to access and articulate emotions, thereby contributing to alexithymia.

    I am inclined to think it easier to observe and make inferences about how someone else is feeling and what may be triggering it than I am about myself in areas of long established difficulty.  I believe that is likely the case often in wider society and not just autism.  For this reason I believe specialist autism support is what is required to identify the adjustments required.

    I think that perhaps the tribunal route is more demanding upon a variety of personal resources for all concerned - including time and commitment.  Perhaps it also signals as unions not being able to help their member to resolve the problem and they remain engaged to do so even when evidence suggests they are not.

    In respect of wanting to "get even" with employer this has become a similar obsession with me too.  In a sense it has become emblematic of struggles in a wider sense - albeit one that is meant to be formally regulated and supported by employment and human rights legislation.

    In respect of it becoming an unhealthy obsession I sense the irony there.

    In my case I am turning it into a wider issue where my case is emblematic of how the employer is behaving to others as well.  Making it not just a personal struggle helps me feel better about.

    Best Wishes

Children
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