Answers from some of your - or at least my - fave Insta Influencers!
Growing up with a disability, the prospect of encountering/meeting new people - particularly those around my age in childhood - which should, and for many probably did, bring on feelings of excitement - for me incurred opposite, negative feelings: of anxiety, dread and tension.
I think this is because, around young children, their curiosity, and perhaps general lack of awareness and understanding, came across as intrusive and perhaps even a bit of a confrontational ambush, if I’m to be completely honest. This was at least particularly the case when I, too, was at this age. Now, as an adult, admittedly sometimes children’s manner of approach can still sit a little uncomfortably with me - for its abruptness and lack of tact/sensitivity - but now I am able to better understand myself that, most of the time, this is not intended to be anything negative towards the recipient, it’s often just part of the usual childlike curiosity!
I HAVE TO mention my time at University, too, as I do strongly believe that it is one of the major influences, if not in fact the turning point, for me to go from not wanting anyone to approach me, in any way, regarding my disability, and shutting and/or breaking down when/if they did, to openly talking about it, welcoming questions/conversation, and even actually wanting people to approach me about it - actively encouraging them to do so!
Here are the (main) reasons why I think my mindset flipped regarding this:-
The independence, and therefore freedom, I received whilst living away at University, in (a relatively large) part due to its accessibility - and that being the most overall accessible experience I had throughout my time in education - perhaps made me normalise my own internalised ableism and/or gave me more confidence in my capabilities to live by, and look after, myself. Which could perhaps then translate to: ‘Well, if I’m now aware of this level of my capacity, then I shouldn’t/don’t need to be so negatively affected by people’s commentary, and don’t need to have such a sudden, reflexive wall of defense up when any sort of approach towards the topic occurs…?’
Those whom I was surrounded by at University, (to clarify: this period of my life overall, i.e. not just the times/places on University ground!), didn’t seem phased by my having a disability. By this I mean: they didn’t seem to do a double take, spend more time or attention noticing me or giving me a (usually less than agreeable) look - or even seem somewhat disturbed by my presence - unfortunately what could be said to be my usual experience(s) previously - it was as normal, me driving past them in my powerchair, as it would have been any other person walking past them!
As I’ve aged, just naturally most of those I’ve found myself around are obviously older too; so the awareness/knowledge around disability is already higher, (either that or just cognisance of the fact that, even if you don’t quite understand it, out of politeness & tact you tend not to overtly show any unusual forms of acknowledgement), to the point where there is less of a ‘need’ to look perplexed by me.
Whilst increased acceptance - by both myself & others - can only be perceived as a positive thing, it is in some ways unfortunately ironic that, the time that I was uncomfortable with it was when I was receiving all the questions, stares, points...whatever. Yet now, when I am much more willing to deal with it firsthand and openly welcome approaches, questions, conversations etc from others, is when fewer people are feeling the need or desire to bring them.
It is seeming to me, then, that perhaps having the opposite feelings re the treatment of my disability, would have fit this play out better - essentially, to have welcomed/wanted this notice young, and by adulthood feeling like it should be less necessary - as this would have matched what I believe is a result of others’ age- and experience-related understanding. As I’ve already mentioned, when we were younger, others had this unintentional lack of awareness and understanding, and the natural, childhood curiosity to learn and discover answers - and also perhaps not yet knowing that, socially, we don’t tend to address these things in the direct ways in which they do. Yet, as we’ve gotten older and they have been exposed to more experiences, learnt more and developed an increased awareness and understanding - or at least a level of tact making them reluctant to take such an approach - there is less of a demand for the questions and conversations that I have, personally, only since become ready to have.
In this sense then, arguably, the opinions of Ashley Harris Whaley would have been the more ideal scenario.
Like me, Ashley has Cerebral Palsy, (CP). However, unlike me, she has a rather impressive Instagram following over on the account she uses to raise disability awareness and unite the disabled community: @disabilityreframed.
When I posed the question to her: If I were to ask you: ‘What’s the one thing you would advise able-bodied people not to say to people with disabilities’, what would your quickfire response be?
Below is Ashley’s answer:-
“My response to questions about my disability has evolved and changed over the years, and I'm sure it will continue to do so going forward. In the past, my younger self always welcomed questions from strangers because I was just so excited to have someone engage with me through asking a question rather than just staring. As I've gotten older, I come to resent some inquiries, depending on the asker, their age, and their tone. I resent it because, more often than not, the asker conveys the expectation that I owe them an answer to satisfy their curiosity. And the older I get and the more advocacy and activism work that I do, I've come to realize how harmful it can be for disabled people to have the expectation to answer personal and often very invasive (or even rude questions) just because someone feels like asking them.
So, with that in mind, I would encourage nondisabled people to not ask disabled people questions like "What happened to you?" or "What's wrong with you?" In fact, if you are a stranger to us, try not to ask any questions at all. We are, after all, not human search engines. If you are a nondisabled person curious about the disability of someone you have an established rapport or personal relationship with, then find a way to inquire that is respectful and considerate.
As far as a response goes, I don't have a particular stock one that I use for every interaction or in every context. I work with children, so usually my response to their inquiries is somewhere along the lines of "this is just how I walk." They usually accept that easily and we move right along. With adults, I am much less patient. Like I said, if this person is an acquaintance I might start off with "because my cerebral cortex is damaged" (since I do have Cerebral Palsy) as an attempt at humor, and then I would go from there. If this person is a stranger, I will most often ignore their questions. Or kindly but firmly let them know that it isn't any of their concern. It isn't, after all. Disabled people shouldn't feel obligated to answer personal questions about our disability just because someone decides to ask them. We don't owe anyone an explanation of ourselves.”
Aside from the previously established fact that mine and Ashley’s approach/response to queries regarding our disabilities appear to be mirror images of one another, in terms of our openness to address queries from peers depending on our age, there are other ways our feelings about this appear to differ, too.
First off, how she may respond, but in a more jovial manner, if she knows the person, yet with strangers may ignore their question(s). With myself, however, if acquaintances were to ask I think I would take their interest rather seriously, as - especially now - I would want to make the most of a rare opportunity to provide my take on things, and also inform them as much as possible in this time.
And, with strangers, perhaps not something too dissimilar either. Though I might be even more open, with a longer response, as I would expect them to know less than someone who is around me more, and may then also take their interest in slightly more of an appreciative way: that they just want to learn/understand more. Whereas, with acquaintances, there may be that slight niggle in the back of my mind of: why now/why this? I.e. Having known and been around me, why has it taken you to this point to inquire about something so primary, which I may feel is one of the first things to discover if they were even remotely interested in gaining a better understanding. So, with that, part of me may question the genuineness of their motive ever so slightly.
My understanding of Ashley’s response, though, comes from my interpretation of it. With people she knows she can be a bit more accepting of them approaching her with this, and makes light of it because of that pre-established relationship with them, but perhaps also as a slight defence mechanism of some form. Though, with strangers, she may ignore them due to it feeling intrusive and somewhat of an overstep given that, as she rightly says, we don’t owe anyone an explanation of ourselves, and the manifestation of our own existence, and therefore shouldn’t feel obliged to provide one!
In some way, this may feed into why my approach depending on age is the way it is. Children’s approach to their curiosity, (albeit admittedly through no intended fault of their own), for me felt confrontational and intrusive, and this discomfort shut me down; yet the more socially reformed and cultivated approach from adults felt more of a genuine interest out of care, and wanting to better both mine and their experience/interaction, and so didn’t trigger my defense wall, as I was more comfortable with this manner, and so was better able to address it. Ashley’s opposite feelings about these age groups, though, I completely understand. She works with kids and so clearly cares a lot for them, and knows well how their behaviour towards these things tends to be, and therefore how best to deal with it. Yet with adults she feels they should have already gained a better understanding, via experience...or at least an awareness of how to handle these situations better. I totally agree with this, I do. Therefore, I think the prominent reason why our approaches differ is because of what the main factor that triggers are response/defense mechanism is: whilst for me, it is how the interaction is initiated and carried out, from a behavioural, linguistic perspective etc; for Ashley maybe it could be more towards how the person’s age and/or own familiarity with her may affect their underlying motive for being so inquisitive, and in such the way that they are.
My second contributor is someone you may be fairly familiar with: Lee Ridley, aka Lost Voice Guy, winner of Britain’s Got Talent in 2018. Again, like me, Lee has Cerebral Palsy, though his, (like 25% of others with the condition), affects his speech - hence the stage name - so he uses his voice synthesiser machine to communicate and to perform his comedy. Like in my own discussion of my experiences above, Lee’s answer discusses the impact that one’s personal journey through education can have on their outlook towards themselves and/or their disability:-
I really wish people would stop asking if the people I am out with are my carers. Because obviously disabled people couldn't just be out with friends. That would just be stupid. Just to put the record straight, I have always been very social and have a lot of mates. I had some great friends at school. i think it's rather different when you attend a school for disabled people, compared to a mainstream school. In mainstream schools, it is the fittest and most attractive children, who are most popular. But it wasn't like that for me. At my school, you were judged on how bad your disability was. If there wasn't that much wrong with you, then you were bullied for [being] too normal. And let me tell you, you don't want to be on the receiving end of an electric wheelchair!”
I can’t speak for/relate to Lee’s school experience, as I myself had a mainstream education, so - like he said - they probably are very different, and each of us could only speak for that which we encountered. Though I can relate to - and 100% agree/resonate with - the frustration of the assumption that every non-disabled person you are out with is assumed to be caring for/looking after you, rather than just choosing to be in your company as a friend and social companion, like other, ‘normal’ people and friendships. Oh, and as a fellow wheelchair user, I can confirm - you definitely do not want to get on the wrong side of someone in a powerchair!
Sometimes I do feel like the issue of generating more of a (positive) conversation surrounding disability, to increase accessibility and decrease ableism, is a bit of a catch 22 situation. This is because, we want there to BE conversation - because how else can we expect knowledge and understanding about disability, among our non-disabled peers, to expand - yet people without disabilities are scared to ask and/or discuss it, for fear of offending and/or saying the ‘wrong’ thing/something ableist. But this happens because they aren't informed enough, so they are ignorant. Basically, I think the feeling is: how do you discuss without offending, when you don’t know what might offend, but how do you learn what might offend without a discussion, (where, again, you feel that you may run the risk of offending)?
And I do empathise with abled-bodies in the sense that, as everybody’s personal, individual (experience of) disability is sooo subjective, that which offends one might not necessarily offend another; it’s how you perceive what is meant by what is said, I suppose! For instance, many disabled people take issue with being called inspirational. And whilst I can see why for them - they don’t feel like they’ve done anything extraordinary, just living their lives doing everything abled-bodies do, so the addition of a disability shouldn’t warrant somebody carrying out an everyday task being labelled as inspirational - I don’t really take issue with the term ‘inspirational’, personally. In fact, I largely take it as how I feel it’s meant by most: as a compliment. (Only when it appears to be said patronisingly does it not sit well with me).
Having said this, though, it has actually surprised me a little how much I actually did agree with - or at least could see the point of view of - all the contributors to my piece. So perhaps you needn’t worry quite so much about each and every thing possibly offending an individual; even I may have learnt/realised that there may be more collective agreement, amongst us all in the disability community, over these things than initially thought!
Now onto the final Insta Influencer to say their piece. Madison Lawson was born with a rare form of muscular dystrophy, meaning that she, too, has used a wheelchair all her life. Maddie has a degree in journalism and writes for many acclaimed magazines, including - but not limited to - Vogue and Glamour! Not to mention her whopping 11.4k followers on her Instagram, @wheelchairbarbie, where - aside from looking super glam, (she’s modelled for Sephora too, of course!) - she also uses her platform to help spread disability awareness...and help to ‘normalise’ the events, in our minority group, that are often marginalised. She was more than happy to answer my question and here’s what she had to say:-
“I really don’t like it when people think calling me pretty for a girl in a wheelchair is a compliment. Backhanded compliments, although well intended, assume that people with disabilities are supposed to be unattractive and that’s just inherently not true. It is just one of those microaggressions that reminds me that people think less of people with disabilities.”
And, let’s just say, she and I got into a little back and forth, giving our two cents on how we felt about the matter! Which again showed agreement, understanding, relatability and compassion!
And that’s us folks!
But, as it’s my piece, and my question that I posed, should I suppose that it would be expected - or maybe even wanted, (though probably not, after all my rambling) - that I provide my own answer, too?
With things like this though, it’s hard. As I think for me it’s one of them times where, when you have to think of something at the time, nothing will even come to mind - or at least suffice - but then, afterwards, you’re like: agghh, I could’ve said this or I should’ve said this instead.
But, I guess what would particularly round of well with the content matter of this piece, and the realisations that even I myself have shared coming to whilst putting it together, is:
Don’t be so afraid of saying the wrong thing, that you don’t say anything at all!
And - OH MY GOODNESS - when the question is asked: how should I speak to somebody with a disability?
The answer is: the same way you would to anybody else!
Hmm...it’s almost like we’re human beings, just like you, isn’t it. Funny that…
But, also, to round off - I saw this Insta reel from another disability activist I follow, yummy first-time mummy and fashionista Sophie, @fashionbellee, that I could really relate to (and shared on my own Insta story @livwilko_x ):-
And all I have to say about it now is: had them all, have them all, and hate them all; so, in short, please don’t say them!
*PS. You may have noticed that, throughout this piece, I have fluctuated with regards to my language use re disability:-
Disabled person vs Person with a disability; able-bodied vs non-disabled.
Again this is personal preference. And in the former, the first term is identity first language, whereas the second is person first language. Most members of the disability community have one that they outright prefer and therefore consistently maintain. I, again, do not particularly have a preference.
And, once more, if you’re worried about potentially saying the wrong thing to someone, the thing to do in this - and almost every other - case is: just ask (first) which term(s) that individual would prefer you use in reference to/conversations with them! Simples.
Thanks for reading guys.
Until the next one… With Love, from Olivia x
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