Something a little different from me today, discussing a recent post I saw on social media and how that made me think about the way people with invisible disabilities are perceived compared to those who are visibly disabled.
For those who don’t know, I have cerebral palsy spastic diplegia which means I cannot walk unaided. I am a full-time wheelchair user, at least when I’m outside. I’m probably what you would consider to be your ‘stereotypical’ disabled person; everyone sees a wheelchair user and knows they’re disabled, it’s almost the basic level of disability knowledge. However, I recently saw a Facebook post that my good friend Lizzie had reshared. She’d originally written it before I even knew her, about an incident that had happened regarding perceptions of her disability and how it made her feel. This post made me realise a level of privilege I have in being your ‘stereotypical’ disabled person. So, I decided to let you in on that realisation and have a bit of a chat with Lizzie more about this issue.
In her post, Lizzie describes the incident; a stranger in a pub pulled her friend aside and said Lizzie “couldn’t really be disabled” because he’d seen her get up from her wheelchair and walk to the jukebox and back. It was then that I realised others questioning my disability is something I don’t really experience as no one sees me out of my wheelchair. The most I’ve ever gotten is “oh my god you’re sitting” said to me once when I transferred out of my wheelchair, but that was more hilarious in its ridiculousness than it was offensive or upsetting.
The other kind of privilege I felt is when Lizzie mentioned that she has multiple conditions. I felt oddly privileged that I only have one condition and don’t have to balance the competing impacts of multiple conditions, this really opened my eyes to what she goes through. Lizzie herself says that until age 19, she would have been considered to have an invisible disability, although she sometimes used a walking stick for both mobility and to help with her visual impairment (that whole thing I mentioned about balancing multiple conditions); people would assume the walking stick was for aesthetic reasons! She would often need to take breaks while walking and saw coffee shops as a good excuse to sit down without drawing attention to herself. On one day she could be walking around town perfectly ‘fine’, the next she might be unable to wear shoes or walk without her walking stick. This process of going from being able to walk to not could even happen within the same day. Her teachers struggled with the variability of her condition and what that meant for her ability to do things. Throughout her teenage years, she was regularly asked probing questions and was even told to give the stick she was using back to the ‘real’ owner. This struck me, as I’d heard of many instances where disabled people were told that they weren’t disabled and to give mobility aids back, but to hear it has happened to one of my best friends really brought it home how prevalent these incidents are.
Lizzie discussed that disability has no ‘look’; you cannot tell if someone is disabled just by looking at them and being a wheelchair user does not automatically mean someone is paralysed or paraplegic. This was one of things where, as a wheelchair user, you read it and then yell “THIS!” at your screen. As an ambulatory wheelchair user, I can stand to reach items on higher shelves in the supermarket, and when I do that people do a double take. It’s almost as if their brain glitches for a second because they can’t comprehend the existence of an ambulatory wheelchair user. This is an experience that Lizzie echoed (another “THIS!” moment).
She said that as a teen who was invisibly disabled, she never felt ‘disabled enough’ to claim that identity because even we as disabled people are taught this ableist idea of having to meet a certain level of disability to be able to claim, “I am disabled”. For Lizzie that meant battling with the fact that she was visually impaired, but it wasn’t THAT bad, or the fact she had limited mobility but COULD still walk mostly unaided. This left her feeling like she didn’t fit into either category of able bodied or disabled. That was until she became more disabled and realised, she’d missed out on a whole disabled community. Now she wishes she’d stopped trying so hard to pretend to be abled when she wasn’t and embraced the disabled identity and community earlier.
Lizzie also talked about a topic that I often try to show here, that being disabled doesn’t mean you have to stay at home. If you’ve been paying attention to the content of this blog, you’ll know this is also a message I strongly support. I’ll be on a train, or at a pub or a concert or an MMA show (pre COVID times obviously) just living my life and I make no apologies if that breaks your preconceived ideas of disabilities. Lizzie pointed out that she (and other disabled people) often has to forego certain activities so that energy can be used to attend or do something else she REALLY wants to do, so if you see a disabled person out and about socialising, likelihood is they’re sacrificing something else to be there, so PLEASE just leave us to socialise in peace. Oh, and while we’re here: Not all disabled people have carers, especially not 24/7. So, if we’re alone, likelihood is we’re fine, so just leave us in peace please, unless we ask for your assistance.
Something else that Lizzie said is that she has mobility aids because she NEEDS them, not because she’s trying to play the benefits system or get pity. This was another “THIS! *slams hand on table*” moment. I beg, can we PUHLEASE just throw the whole ‘disability scrounger’ narrative in the bin with the rest of the hell that was 2020?! While we’re discussing narratives and ideas around disability, Lizzie made the point that mobility aids aren’t a detriment or a sign of us giving up, they are an improvement. For example, she could only walk around 10 minutes unaided (or more if she pushed it, but she would regret it the next day and be unable to do much at all) compared to around 25 minutes with a walking stick. She can technically walk without aids now, but it’s exhausting and wastes energy for the purpose of moving just a few meters. Using crutches reduces that effort and means she has more energy for activities, and that reduction in effort and saving of energy is even greater when using her wheelchair. Lizzie also made a great point about the response to different mobility aids. She mentioned that if she’s on her crutches she ALWAYS get asked “What have you done?”, “Did you fall over?” or “How long will you be on them?” even though they are bright pink and obviously not NHS standard issue crutches, but these are questions she’s rarely asked in her wheelchair. This is an obvious example of the way different disability aids are viewed by society, and I think it links back to what I said when I opened this post, about wheelchair users being seen as the ‘stereotypical’ disabled person. Wheelchairs are considered a marker of permanent disability whereas any other mobility aids are seen as temporary.
However, Lizzie also said something which reminded me how different our experiences of disability are. She said she’d rather not use crutches or be a wheelchair user, and I realised I don’t know how it must feel to think that way because, as someone who’s been physically disabled and had limited mobility since birth, I don’t know anything other than using mobility aids so it’s very difficult for me to think in terms of a life not using them.
Lizzie’s final point in her post is that she is happy to answer questions or educate people on disability, and I would say I have that same mentality too. However, be aware, if you’re an adult with an inappropriate question, I WILL tell you so, to your face, in public. I’ve spent too long answering questions which are either plain inappropriate or could easily be answered by Google, to run through the whole ‘smile sweetly and trot out my life story’ routine again. Sometimes, someone just needs to tell you you’re asking an inappropriate or personal question. As an extension to this, Lizzie pointed out that sometimes the answers to these questions are long or emotionally taxing, particularly as she OBVIOUSLY doesn’t feel comfortable telling random, nosy passers-by about her cancer treatment or complex genetics in the middle of the street! Overall, there is time and place for deeper questions, which isn’t just in the middle of a pavement, with a random stranger you will probably never meet again. The situation is different when it’s kids asking questions as they’re always welcome to ask and, perhaps more importantly, parents shouldn’t pull them away from disabled people like we’re contagious, because that leads to the kind of people who, as adults, ask inappropriate questions or have the same view of disabled people as the stranger from Lizzie’s original post who had decided she “couldn’t be disabled” because he’d watched her complete one task on one specific date.
Lizzie ended her post by asking 3 things of people: Don’t assume, don’t discriminate, be kind. I thought that summarised the point of the post quite elegantly, so I’m going to forego my usual sign off to leave you with those words too.
Em (Invincible Woman On Wheels) & Lizzie (fellow wheelie and general queen)