Woman in novelty sunglasses stares into the camera
Aspergers,  Bipolar,  Blog,  Mental Health

Accepting Disability – A Work In Progress

It’s been a while since I last wrote here. I gave myself a break over Christmas with the idea of returning in the new year refreshed and replenished but for some reason I’m feeling a little lost, directionless, a little… depleted.

My head is crowded but when I sit down at my kitchen table to write I feel stuck; as though I’m trying to stick my pen in my body and write what doesn’t want to be written – religion, existence and the enigma of the mind. And love too, the tsunami of pleasure that comes from the simple motions of connected lives, things like making dinner, building our imaginations in Lego, the warm pressure of bodies that begat one another, if not in flesh then in feeling. How to explain the richness of a life many would regard as unstable, diminished, different. Why try?

Right now everything I think about committing to the page seems empty and irrelevant – more a reach than a reflection. Not surprising considering the seismic shifts in perspective 2014 brought me I suppose.

My diagnosis last year with aspergers and bipolar brought me immense joy, something akin to being handed a gift. The ill-fitting platitudes about ‘coming to terms with things’ and ‘moving on’ indicated some didn’t get it, their sympathetic murmurs a vocalisation of their expectation I’d be distraught not delighted, eyes sizing me up as in some kind of denial. But consider this: a lifetime of not being good enough/trying hard enough was recast into a narrative that absolved me of the self-blame I’d lugged around like a recalcitrant toddler. Finally! External, qualified vindication I wasn’t lacking – just wired differently. This offered me the opportunity to do something I’ve never been able to:  accept myself as I am.

 

What greater gift is there?

 

For a while I felt a sense of release, and walked around as though on a cloud, but as the euphoria subsided it became evident that fully realising the implications and inferences of my altered reality was a more gradual process than I had first thought. The thunderbolt clarity and sense of freedom I get when I remember my justifiable reason for being me (does anyone else need a justifiable reason for being themselves?), is, at this point, momentary, unsustainable – the real work lies in tattooing this new information into my existing personality so it becomes part of who I am.

I’m a literal thinker and figured simply having my condition validated got me off the hook from Sisyphean striving and moving directly to self-acceptance (pass Go, collect £200). Not quite. Turns out it’s a very non-linear journey.

I’ve learnt a lot about how my conditions affect me – and how to recognise and deal with autism in my daughter. Unconsciously, (and often frustratingly) I still measure myself by neurotypical standards; habit again – it’s what I’ve always done. But inside I don’t ‘feel’ autistic. Looking out I don’t see the world through a lens watermarked ‘mentally ill’. I don’t identify myself as disabled in any way (I’m reminded of a post I wrote some time ago detailing how I discussed mental illness with a new friend and never thought to mention my own). I’m skilled at hiding my difficulties, and the trusted friends I’ve asked said if they didn’t know of my diagnosis, there’s nothing about me that would tip them off. I feel fraudulent laying a claim to disability.

But I came to realise much of that is because of how I view disability: with the emphasis on the first syllable. Joining online discussion groups and speaking to others with similar difficulties has shown me disability is about being different, not less. It’s about understanding the bigger picture, accepting disability exists because of the way society is organised rather than by a person’s impairment or difference.. We need to embrace neurodiverse perspectives the same way we work to embrace diversity in race and culture.

So I remind myself it’s ok to feel as I do, and more importantly, to give it expression. I’ve spent so long hiding my deficiencies (and the gnawing secret shame deception brings) it’s instinctive. A lifetime of working to blend in screams defiance at anything that singles me out, the little voice in my head promising humiliation if I persist.

When I do try to be open about my (and my daughter’s) needs and differences the voice regurgitates all the familiar comments: “What makes you think you’re so special?”
“Everyone’s a little bit (fill in blank with neurological condition of your choice) aren’t they?”
“Why do you want to invite discrimination towards yourself/your child with a label?”
“Oh everyone knows that’s not a real ‘thing’, doctors just make up these things so they can flog you medication.”
And perhaps worst of all, “That’s all well and good but if you don’t push yourself you’ll never get better.”

I’ve encountered all of these in actual discussion and feel as though I must be armed to the teeth with facts to counter them in order to self-identify as autistic or bipolar (still having to justify myself?) but, like many aspies, my brain freezes under pressure. I guess I don’t need to take on the responsibility for changing other people’s misconceptions. Learning to be honest and authentic – standing in my own truth – is more important right now.


Related Posts:
When Aspergers is Good News
Where Have You Been



31 Comments

  • Moni

    I continue to admire your courageousness. I think that letting go of the need to change other’s perceptions is a wise decision – but probably easier said than done!

  • Apple Gidley

    So true a statement Aisha – “We need to embrace neurodiverse perspectives the same way we work to embrace diversity in race and culture.” There are some days I wonder if people even look outside their front doors!

  • sonyacisco

    A wonderfully written post. I agree with the commenter above about that statement. Normality is a spectrum as much as autism is, and we are all on it somewhere. You can change perceptions merely by being yourself and writing so well, you dont need to be a banner waver, just be yourself, accept yourself, and others will follow.

  • Amy Squires

    The things you have been told are terrible and come from small minded people that have never actually dealt with anything that you are going through. You are amazingly strong even talking about this and just reading your understanding of the whole situations shows how much courage you have.

  • Phoebe @ Lou Messugo

    This is an area I really know nothing about though I admire your courage. I had a little look at your About section and can certainly relate to the expat side of your life and amhappy to have found your blog through #blogsupport

  • dillydrops Bek

    Many people don’t understand that others are different to themselves. You shouldn’t have to justify yourself to others. I think it is great that you are open about your daughter and yourself to others. Thank you for sharing your experiences of your diagnosis.

  • My Family Ties

    I salute you for your honest and brave writing, my daughter has ASD and many of the questions you raise people have asked us. In fact for us as well it was sheer relief to be (finally) told that our teen has ASD. It doesn’t define her but intrinsically it shapes who she is, and since her diagnosis we have found it so liberating to be able to help her so much more in every aspect of her life. Any negative press really does lie in ignorance of other people’s perception of what ASD/Aspergers is, and I think society should really embrace the (positive and amazing) differences that people with these conditions have.

    • Aisha Ashraf

      Thank goodness your daughter got her diagnosis in time to aid her (and you) through what can be a notoriously difficult stage of development. Knowledge is always power, it’s what you chose to do with it that makes the difference. I totally agree with your last sentence and think that the commonly held view of disability – indeed the word itself with its immediate connotations – is the biggest barrier to greater understanding.

  • Emma (My Little 3 and Me)

    I would say for now embrace your diagnosis for you and get out of it all you can and all you need. I wouldn’t waste your energy trying to battle other peoples misconceptions and bias. For now put yourself and your family first. 🙂

  • mike

    Aisha, I’m a 53 y.o. bp male and I cant help you. Don’t get me wrong I would love to. As I get happy I can shine a light on others.I wish I knew this in high school !!We are perfect,
    exactly as we are…sending good karma your way…Mike.

  • Louisa

    I think accepting you can’t always change other people’s perceptions can be liberating. I used to get upset when people thought my aspie sons behaviour was just naughtiness now I just ignore them. We are all as we were meant to be x

  • Rachel @ Parenthood Highs and Lows

    A beautifully written post. I think a lot of people just don’t understand and it comes across in the wrong way. Don’t worry about changing their perspectives – I hope as more children come through the system with earlier diagnosis and more support, the acceptance of disabilities (I never know the ‘right’ word to use – after many years of teaching I have yet to come across a child on the autistic spectrum who has been disabled by it – they’ve embraced the difficulties it sometimes brings) will be more common. Thankyou for sharing

    • Aisha Ashraf

      While there’s no question that these conditions present challenges for those who have them, they’re also a source of additional skills/experiences, so yes, ‘disability’ seems an overly negative term. I know what you mean about not knowing the ‘right’ word. I think there is no single right word – everyone has their preferred way of conceptualising (aspects of) themselves. Some wish to identify as bipolar or autistic, while others take umbrage at the perceived assumption of condition as definition of person and prefer to say they have aspergers/bipolar. Some argue for the use of person-first language – “people with disabilities” rather than “disabled people” or “disabled” – to highlight disability as a secondary attribute not a characteristic of a person’s identity. While critics state that separating the “person” from the “trait” implies the trait is inherently bad or “less than”, and thus dehumanizes people with disabilities.
      And just look at the trouble Benedict Cumberbatch got himself into with his reference to ‘coloured people’ instead of ‘people of colour’. Those with a hair-trigger inclination to find offence only serve to make dialogue between groups more difficult. Just as there is the idea of “presumed competence” with regard to disability, so too should there be a presumption of innocence when it comes to the plethora of terms in use today. No need to get offended – just see it as an opportunity for discussion. Thanks for the comment 🙂

  • Mummy of Two

    It is good to take a break from things sometimes and come back refreshed. People can be so cruel and inconsiderate with their comments and I would try, as hard as it might be, not to listen as they haven’t a clue what you are going through. I am glad you have managed to write down your feelings, it can be good to share can’t it.

  • Charlotte

    I’ve had a lot of those things said to me too, and some I even agree with to a point. Sometimes it’s easier not to tell everyone 🙂

  • Russell VJ Ward (@RussellVJWard)

    “My head is crowded but when I sit down at my kitchen table to write I feel stuck.” I’ve been there too. And recently. When life got in the way, things got complicated, and instead of my writing well filling with inspiration, the opposite happened. I also got stuck. But you solved the problem in your last sentence: “Learning to be honest and authentic – standing in my own truth – is more important right now.” Do that. Write from the heart. Write with honesty and authenticity. Your words will flow again, as they already have done in this post. Just write xx

  • Actually Mummy

    I think it’s very difficult to walk away from people’s misunderstanding and preconceptions. I also think it’s a very lucky person who can honestly say they don’t struggle with some aspect of their lives and health, be it a diagnosed mental health issue, or a personality trait that causes them angst (or causes another person angst). But I think if you can do it, you will be all the stronger for it. A very wise person once said to me that you have to be your own best friend. It took me a while to work out what that meant, but it has been a huge support to me ever since. I hope you manage to keep the strength you’ve obviously found, and do what is right for you.

  • nelliepmoore

    Thank you for writing this. I’ve backtracked to this post from a later one you wrote, Autism and Faking it. Both this one and that later one are powerful and right on. I was diagnosed last December (almost a year now) at age 53. Hearing my diagnosis was both anticlimactic and deeply affirming – though part of me was numb. Like I finally had an answer. Was it really true??? I can’t believe it’s been almost a year and oddly it’s only now as I come up on this first year anniversary that I feel it beginning to really sink in. Over the course of the past year it’s like things have been thawing out in me. Everything I have done to pass, fit in, blend in, cope, all of it has started to fall away and part of me is glad, and another part is grieving each time I recognize another part of me that I had hidden away. As I recognize these parts I feel my body aching. I’m trying to figure out in recent weeks, is my body aching simply me getting older, or is it the coping tools, the masking tools dropping away and in their place the real me that has been hidden away for so long is now raw and tender and hurting. I feel like my symptoms are worse now. Getting words out, identifying emotions, sensory processing, fatigue etc. Or maybe it’s just that I’m coming to recognize the symptoms, me, and I can no longer mask. I’m so very grateful for the doctor I am working with, and finally having a diagnosis. I needed to know officially, even though I know I have a nephew who is autistic, and two brothers with pretty severe delays. I had to know for me so that I would stop beating myself up, so I could be okay with myself and those are both things that are works in progress. I’ve heard the “who told you that” and “everyone’s a little bit” and “you are not – they have no business practicing medicine” – the last was like a punch to the gut, hearing it right after my diagnosis. I continue to understand myself little by little and feel more each day that I do belong, there are others like me and I am grateful for that.

Fewer than 1% of visitors leave a comment - be different, be heard, be someone with an opinion.

This site uses Akismet to reduce spam. Learn how your comment data is processed.