It’s always nice to start off a New Year well, right? So the first good thing you can do to start off 2019 is to help start changing the attitudes towards disability, in a quest to make society a better place for everyone. It’s not uncommon knowledge that 2018 was a “big year for disability”, as explained by Dan White, and campaigners of better disability rights, such as the wonderful Dr. Hannah Barham-Brown. So many campaigners have already all worked tirelessly to get the message across. We’ve all given our words on the pitfalls of disability attitudes and stereotypes within society, but where then, are those actions? As a disabled young person myself, I am not afraid nor ashamed to speak up about these issues, and I can only hope that by sharing some words of wisdom and the basic starting pointers to generating change will be just the beginning of a brighter future for people with disabilities.
1. Address us directly
I wouldn’t honestly know where to begin with venting over this frustration, commonly shared by so many of us. As a deafblind person with a mitochondrial disease affecting multiple systems, my long white cane and hearing-aids in both ears are the visible component of the disability package. As soon as people see this, whether that be in a restaurant giving my food order, standing in line for the train on the platform, or rocking up at a nightclub with friends, they immediately assume I cannot communicate. Instead, they will address whoever I’m in the company of, or in, being only referred as “does she need help”, or “is she alright to take the stairs?” I’ve even had the classic “are you able to take her there?” when in fact I am often the one who takes my friends to places, particularly when they are a little less adventurous than myself, or who are, quite frankly, overwhelmingly drunk to the point that I am holding them up in one arm and holding my cane in the other.
Fact is, just because we may be using an aid to help us in the face of a disability (or quite often not, if it is an invisible disability), we are not stupid, nor inexperienced. We, like the rest of society, seek out the need to communicate directly with others around us, as anybody would do. It baffles me as to why, even with a visible disability, the general public still try to convince themselves that we are, on the whole, invisible. Perhaps it’s a mechanism of being unsure of what to say, or how to say it, with the fear that they will offend us in some form? It’s honestly nonsense. So next time, ask me for my food order – it’s my dinner and I am paying for it, after all. And if you’re worried that I may or may not be able to do something, just ask me. Chances are, the person with the disability will know themselves far more than the stranger standing next to them.
2. Our aids are not toys
Yet again, another really common frustration that gets us every time. Whilst out and about, we use our aids for a very good reason – to make our disability an ability. To embrace our independence, and to carry on with our normal lives, as the rest of you do. Be that a wheelchair, cane, walking stick, guide dog or epipen. Please, then, do not start pushing our chairs from behind us, picking up our sticks and pretending you have a broken leg, administering wasteful shots of adrenaline to your friends just so that you can stick a needle in them, or petting our cute ‘puppy in a pet shop’ assistance dogs when they are on working duty. It was only a fortnight back that I was sat down having dinner with a lovely friend of mine, a wheelchair-user, when the waiters began, continuously, pushing her chair in, as though it was part of the dining furniture. It’s not. And the number of times people have snatched my white cane off of me on the dance-floor and began impersonating the likes of an idiotic pole-dancer, or playing medieval javelin across the bar. You have just taken away my eyes. I can’t take another single step without the fear that I will go tripping over a curb or someone else’s foot without knowing. On one occasion, my white cane was snatched off of me whilst queuing to get into a nightclub. That person impressively pulled off ‘the impression of a blind person’, the bouncers let them in quickly and efficiently, and I was left standing out in the cold for a good half hour, my cane now probably being passed around random ravers before being forgotten about as they hit their 3rd vodka.
If, you’re someone like me, who always has that urge to instinctively help someone you think may be in need, then absolutely do so – that person will forever be thankful for the small ounce of kindness there still is out in this world. BUT, always ask them first, before interfering. I have had some lovely passer-bys approach me on the London Underground, asking if I needed an arm or some guidance to the next station, when they see my cane. But I’ve also had the conservative sorts whom just hurry up to you, yank your arm (and cane), and hurry you along through the ticket barriers, holding the cane instead, off the ground, at times. Really, what use is that? What’s more, it’s aggressive and quite frankly, ignorant.
3. It’s not for the tick box, it’s for life
When I got accepted into medical school first time round, it genuinely felt as though I had flown through the whole application process. I was quickly invited to interview, and within just a few weeks I was given an offer of acceptance, providing I met the grades in my summer exams. Between getting my offer and receiving my results, I visited that medical school 4 times, meeting up with various support bodies within the school to ensure all the support was ready and in place. I was reassured that it all was, and that they were looking forward to having me. When I achieved grades far higher than my conditions of offer, I was elated that I was going off to medical school. But, just a week before moving into my university accommodation, ready to start a new chapter in my academic life, I was rung up by the medical school one evening and simply told that they had changed their mind. They no longer wanted me because I was visually impaired. And that was that, left without anything at all for the next year, and unable to go to university. Thing is, the medical school had done what every institution or setup does these days. They ticked the box to show that they had not discriminated against that applicant with the disability, to show that they were inclusive, but once you are officially theirs and on their system, they can essentially do anything they like to you. And that’s exactly what happened to me here. It’s unfortunately a sad fact of life these days in all forms of society, not just disability. People like to be seen as though they are doing absolutely everything they can to help and to abide by the social morals, but really, it’s all still very much a show, to tick that box to seem like they are complying with what is only considered right.
This needs to stop. Not the whole ensuring you have been inclusive to others, but the misleading culture, the fake promises and the fake acknowledgments that you’re giving the right provisions. Supporting those with disabilities is not so that you’re own reputation can become glorified and all good-giving, supporting those with disabilities should be constructive, in concrete, and a permanent act. Because, like the support needed, a person’s disability is also, very often, for life.
4. Disabilities aren’t always visible, so don’t make assumptions
You may‘ve heard about the issues we endure when it comes to using the well-known disability ‘Blue Badge’ recently. This Blue Badge enables people within the vehicle, whether that be the driver or passengers, who have a disability, to park within a designated space that offers more room, closer to facilities, and overall making getting out a more efficient and easy process. But too often, members of the public are still approaching many of us, questioning, and sometimes interrogating us, why we have a Blue Badge and that we may not appear ‘disabled enough’ to be granted the ‘privilege’ of having such a badge. This is infuriating. Being deafblind, you could argue that mobility is not an issue here. Yes, it may be easier for me to find the vehicle upon return, so that I’m avoiding the misery of smacking into a dozen of cars and their wing-mirrors before getting to our own car, but the real disability is not visible. The long white cane is not necessarily always the reason for needing the Blue Badge. Having a mitochondrial disease and muscle disorder is the reason I can’t always walk far to and from the car, but where are the aids, the visible aspect of that disability, to prove I need this, may you ask? There isn’t. So many people who desperately require a Blue Badge to make outings easier and more accessible have the so-called ‘invisible disability’. Chronic pain, EDS, epilepsy, arthritis. The list could go on. So please don’t assume things if you can’t always find the immediate evidence to someone’s disability. You may find that sometimes, the invisible disabilities are in fact more debilitating than the visible ones – definitely the case in my situation.
5. Accommodate, don’t segregate
On the whole, we are, as a society, gradually getting better at accommodating those with disabilities. We still face major issues with the lack of disabled toilet facilities, wheelchair ramps in many buildings, tactile signs and T-loops for the deaf. But, we are slowly making progress, though that progress is simply not quick enough. In the meantime, we continue to struggle in navigating a world that is just about equipped for the fast-paced, entirely able-bodied person. The irony of sitting in the neurology clinic waiting for my appointment was that the corridor leading down to the doctors’ offices was so narrow that none of the wheelchairs could fit down them – not exactly useful for those patients with neuromuscular conditions – in a neurology-based clinic, huh?
i was lucky enough to attend a specialist school in my final 3 years of secondary education. My time at a mainstream girls’ grammar was a slog, the adaptations to my sensory impairments minimal and the general attitudes and behaviours of teenage girls brewing on an unfriendly and unhelpful culture. Going to a school equipped for visually impaired students meant that I was able to meet others in the same boat as me, others with a visual impairment, but also to be taught by those who were specially trained in knowing how to best support young people with visual impairments, whether that be marking a piece of work written in Braille, or understanding that not being able to see things as well makes everyday assignment tasks a lot longer and harder for us. But, what I didn’t like was that we were almost encased in a sort of bubble. We were segregated from the ‘outside world’. We were encouraged to make friends with other visually impaired people only, our every move, from going to the field at the back of the school, or Tesco Express down the road, was rigorously risk-assessed. For months on end I had no interaction with any ‘non-visually impaired’ people, other than my family, because I was at a ‘special’ school, specifically for ‘special’ people. This is arguably unhealthy, and did me no favours in my strive to grow my confidence and independence prior to starting university. So, although these institutions and structures in place sometimes do us the world of good, in ensuring those with specific disabilities have the rightful access to the best support, it also wraps us up in cotton-wool, away from the rest of the thread – and this is perhaps why society still seem so ignorant and unsure of what to do when it comes to bumping into us on the street. This is, yet again, another strongly valid point for needing to introduce an ambassador, or overall representative, for SEN children, within the government body.
6. Not one of us are the same – we are individuals, so treat us like individuals
The trouble of others trying to understand a disability is that people often think we are all part of one group, one species. Where, in that one group, all wheelchair-users have the same level of paralysis and/or movement, all visually impaired people see exactly the same things to exactly the same degree, and so on. What we fail to realise is that every single disability has a spectrum, a spectrum often so diverse and stretched out that not a single one of us will have that exact same experience of the same disability. And this does not bode well when it comes to able-bodied people making assumptions and stereotypes of us, based on what very little knowledge they have of that broader group of disabilities. I experience, and continue to experience this, every single day. Within my medial school education, when I have to inform a lecturer or supervisor that I am registered blind, or if a doctor sees my cane or hearing-aids they immediately assume the former or latter – that I’m either completely blind and incapable, or pretty much fully-sighted and need no assistance whatsoever. With the majority being the former, it has meant that I have been prevented from even taking blood pressure or pulse oximetry off of patients…which is forever frustrating, particularly when I’m trying to qualify as a future doctor, would you believe. But, I like to make these scenarios even harder for those by going beyond the typical stereotype of being a blind person, often racing down mountains on skis, spending my free time creating intricate pieces of fine-art or stopping at every quaint street corner to snap another photo for my colourful Instagram account. Not your usual first impression of a person with no sight, no? I can also, might I add, accurately take blood from the vein, with my eyes entirely closed.
The same goes for my many friends who are wheelchair-users. Whilst some are completely reliant on a wheelchair, others use their chairs only when needed. Don’t then, start pulling funny faces, when you see them leap out of their chair for a quick dance. That is only half the story. Guide us through our disability, but also let us guide you – we are, after all, all individuals, who you’ll find, actually have far more a wealth of experience than any of us reading this. You may even find that you can learn something valuable or two off of us.
7. Imagine that is you
Let’s face it. We all say it. We all do it. “If that was me…”, “if i were in your shoes…”. But how many times have we actually considered this when you think of a person with a disability or long-term health condition. When have you stopped to think how you’d personally cope and deal with situations when you suddenly realise you have no feeling in your legs, no eyes to see other than the darkness, no hearing to appreciate the love for your child’s school choir?
There’s really not much to this point other than the obvious. Next time you’re with or pass by somebody with a disability, stop for a moment, close your eyes and just imagine how, what and who you’d be if you had that disability. I can guarantee you it will change the way you think, behave and approach that said person.
Last but not least, this one’s for every one of you who have a disability or long-term health condition yourself. Society can be an annoyance at times. Whilst there is a small minority of people who are just unfortunately selfish, inconsiderate and malicious in nature, the majority of the general public are simply just ignorant – not ignorant out of hate, but ignorant out of misunderstanding, lack of knowledge, and maybe even just obliviously innocent curiosity. You are not the problem when it comes to the negative stereotype of disability, society are. It is our society’s responsibility therefore to change those attitudes, so maybe forward this to a few of your colleagues, friends, family, to begin spreading the word on how we can collectively change social attitudes towards disability in 2019.