Not long ago, a good friend of mine said something revealing to me: “I don’t think of you as disabled,” she confessed.
I knew exactly what she meant; I didn’t think of myself as disabled until a few decades ago, either, even though my two arms have been pretty significantly asymmetrical and different from most everybody else’s my whole life.
My friend’s comment was meant as a compliment, but followed a familiar logic — one that African-Americans have noted when their well-meaning white friends have tried to erase the complications of racial identity by saying, “I don’t think of you as black,” or when a man compliments a woman by saying that he thinks of her as “just one of the guys.”
This impulse to rescue people with disabilities from a discredited identity, while usually well meaning, is decidedly at odds with the various pride movements we’ve come to know in recent decades. Slogans like “Black Is Beautiful” and “We’re Here, We’re Queer, Get Used to It!” became transformative taunts for generations of people schooled in the self-loathing of racism, sexism and heterosexism. Pride movements were the psycho-emotional equivalents of the anti-discrimination and desegregation laws that asserted the rights of full citizenship to women, gay people, racial minorities and other groups. More recently, the Black Lives Matter and the L.G.B.T. rights movement have also taken hold.
Yet pride movements for people with disabilities — like Crip Power or Mad Pride — have not gained the same sort of traction in the American consciousness. Why? One answer is that we have a much clearer collective notion of what it means to be a woman or an African-American, gay or transgender person than we do of what it means to be disabled.
A person without a disability may recognize someone using a wheelchair, a guide dog or a prosthetic limb, or someone with Down syndrome, but most don’t conceptualize these people as having a shared social identity and a political status. “They” merely seem to be people to whom something unfortunate has happened, for whom something has gone terribly wrong. The one thing most people do know about being disabled is that they don’t want to be that.
Yet disability is everywhere once you start noticing it. A simple awareness of who we are sharing our public spaces with can be revelatory. Wheelchair users or people with walkers, hearing aids, canes, service animals, prosthetic limbs or breathing devices may seem to appear out of nowhere, when they were in fact there all the time.
A mother of a 2-year-old boy with dwarfism who had begun attending Little People of America events summed this up when she said to me with stunned wonder, “There are a lot of them!” Until this beloved child unexpectedly entered her family, she had no idea that achondroplasia is the most common form of short stature or that most people with the condition have average-size parents. More important, she probably did not know how to request the accommodations, access the services, enter the communities or use the laws that he needs to make his way through life. But because he is hers and she loves him, she will learn a lot about disability.
The fact is, most of us will move in and out of disability in our lifetimes, whether we do so through illness, an injury or merely the process of aging.
The World Health Organization defines disability as an umbrella term that encompasses impairments, activity limitations and participation restrictions that reflect the complex interaction between “features of a person’s body and features of the society in which he or she lives.” The Americans With Disabilities Act tells us that disability is “a physical or mental impairment that substantially limits one or more major life activities.”
Obviously, this category is broad and constantly shifting, so exact statistics are hard to come by, but the data from our most reliable sources is surprising. The Centers for Disease Control and Prevention estimates that one in five adults in the United States is living with a disability. The National Organization on Disability says there are 56 million disabled people. Indeed, people with disabilities are the largest minority group in the United States, and as new disability categories such as neurodiversity, psychiatric disabilities, disabilities of aging and learning disabilities emerge and grow, so does that percentage.
Disability growth areas — if you will — include diagnostic categories such as depression, anxiety disorders, anorexia, cancers, traumatic brain injuries, attention-deficit disorder, autoimmune disease, spinal cord injuries, autistic spectrum disabilities and dementia. Meanwhile, whole categories of disability and populations of people with certain disabilities have vanished or diminished significantly in the 20th century with improved public health measures, disease prevention and increased public safety.
From a non-conformist teenager to a successful career woman with her own business, disability blogger Kelly Perks-Bevington talks to Disability Horizons about how her disability hasn’t impacted on her accomplishments.
Let me start this piece by thanking Disability Horizons for approaching me, and for taking the time to painstakingly read my rambling blogs about my life, my career and everything in between (if you fancy having a read, scroll to the bottom of the article for a link to my blog). I’ve admired Disability Horizons for a while – it’s current, informative and it doesn’t patronise.
When approached to write this piece, I was asked to write about my career and setting up my own business, something I don’t write about often, but when I do, I always wonder why I don’t do it more.
So, where to begin? I suppose I should address my disability first. My disability is Spinal Muscular Atrophy Type 3 or SMA 3. Because of this, I use a wheelchair on a daily basis. As it’s a genetic condition, I’ve dealt with SMA all of my life and used an electric wheelchair full time since the age of 11.
So, because this story is all about my career, I suppose I should start at the point where our ‘careers’ start… secondary school.
At secondary school, I wasn’t studious in the slightest. I didn’t apply myself and, to be honest, the only thing I tried to do was to NOT be clever, but to instead be as rebellious as possible.
I hated the way we were forced to learn, and I hated the way I was patronised, and pitied because of my disability. Throughout my whole life, whenever someone has pitied me, I’ve made it my absolute mission to act up as much as possible. I really don’t know what I was trying to prove, but it made me feel better at the time.
Anyway, at Secondary school, I stupidly aimed to fail, grinning like an idiot at every bad grade and sitting out of lessons in my ‘physio room.’ Then reality hit, after our GCSE’s, we all had to move on to the real world. I had to decide my future and I had to decide what I wanted to be! I felt so unprepared.
So, I chose media?! Yep, Media, at a college that non of my friends were going to. I’m really not sure why! Although I acted like I had everything figured out, and like nothing scared or even slightly worried me, I was SCARED TO DEATH.
On my induction day I was terrified. I’d spent years at secondary school building up my ‘rebel’ reputation, but there I was, back to square one – everyone in the room looking at me, pitying me, underestimating me. All of a sudden the awesome fringe, brand new beanie and woollen tank top that I’d picked for my first day were betraying me – they’d made me go from ‘cool’ teenager to misguided little girl in a matter of seconds. I wanted to leave straight away.
But, I stuck it out – privately networking between classmates, trying to prove myself, and it worked! And it worked better than I’d ever expected… I met genuine friends, friends that I didn’t have to impress, friends that liked me, for me. I even met my husband on this course!
But, even at this stage in life, when I was accepted and starting to find out who I REALLY was, I still dedicated zero time to learning. I was instead more interested in learning about the spirit selection in our local pub (yes we got served then, no idea how!). So, to cut a long story short, myself and my friends got into a spot of trouble and I ended up being kicked out of college (bet you weren’t expecting that!).
My parents forced me to go back to start a new course, a different course, until I could get a job. I saw this as an absolute death sentence at the time. I was sure I’d never get a job – I had NO GCSEs and I got kicked off a foundation course at college, never mind the fact that disabled people often face discrimination when it comes to work as well!
But it was then that something switched in me. I knew it was time to actually try and work. I tried SO hard to get a job, applying for anything from retail, to bar work, to jobs in factories! If someone told me I couldn’t do any of the jobs, I’d tell them why I could. I was FINALLY using my defiance for something productive, making solutions to the many problems that the world of work presented me and many other disabled people.
After a solid year of trying for a job, someone finally gave me a chance! I got my first ever job , and it wasn’t a bad one. I was hired to be a doctors receptionist and I LOVED it. So much so, that after just a few months of working there I was promoted to Prescription Clerk, a role I loved even more!
I called monthly meetings with my practice manager, begging for education, begging for ANY training course that they could offer me. I LOVED work – who would have thought that could happen?! After a few years in my dream job and a distinction in Medical Terminology (I scored 99/100 on the test), I was ready to move on.
From the doctors, I applied for a concierge role at a local company in the world of football, but got the job as an admin assistant. Similarly to my first job I worked hard and was on call 24/7. I made my own relationships with clients and shortly after starting there I was promoted to account manager with my own roster of clients to look after. This was a HUGE achievement, I was extremely PROUD of myself.
The time spent at my first concierge company was a huge learning experience for me, and the place where I really discovered my self worth. I WAS good! Clients liked me, and I loved my job.
However, it wasn’t an easy job. So, after years of getting the worst clients, always being the one who answered the 4am calls, a never getting invited to any of the events, I’d had enough! And so I left, feeling severely undervalued. That’s when I set up my own business, my company that would become G5 Lifestyle, with an investor and business partner.
After building the company ourselves, and working tirelessly to build a client base, we were in a place where things were starting to take off. However, my business partner didn’t wish to continue – the world of concierge is VERY full on, and it’s a very strange role if you aren’t used to it. So I decided to take G5 forward on my own. I was scared, but I was relieved. Now was my time to make it work… or to go back to work! Thankfully, it worked.
Throughout my career as a concierge I’ve done some AMAZING things. I’ve sent clients to the BRIT’s and to London Fashion Week. I’ve sourced the ONLY particular bag in Gucci America (5th Avenue Store) and I’ve been to collect it! I’ve brought engagement rings for my clients and I’ve planned honeymoons. I’ve seen my clients grow from young footballers without a clue, to happy families… It really is an amazing job, but it’s not without it’s downsides. I’ve had to grow massively as a person, and I’ve had to look deep into myself for self belief that at the time, I wasn’t sure even existed.
Fast forward to today, I still run G5 for a select group of clients and their families and I also co-direct G5 Sports Consulting with my dad, a company that brings people together. We use our knowledge of the football industry and our contacts to consult on various projects. With the success of this company, we’ve brought majority shares in a local Football Club. This is our biggest project to date and probably my most exciting! It’s a daily challenge, but it’s something new and something that we are already very proud of.
As a defiant teen, I never, EVER saw myself running my own company OR working alongside my dad (in fact, I spent my whole career trying to avoid this! – as I didn’t want any ‘help’ along the way!). Now, I’m a 27 year still with a lot to learn, but who has already learnt A LOT. There’s a long way to go, but I can finally see a clear path.
Hopefully my story will prove that you don’t always need As and Bs on a piece of paper to make a success of a situation, and you don’t always need to have your path decided at the age of 16. But most of all, you should never consider your disability as a hindrance or stumbling block. It’s part of your life, but it’s not the sum total of who you are.
We ask a lot of people these days, just do what makes you happy. But first, learn what makes you, you… that’s when you become invaluable.
No matter the type of person, there are lessons to be learned from them. People with disabilities are especially influential, as our hardships in life aren’t easily forgotten. We go through every day with determination and strength, which many people are bowled over by, with many secretly wondering if they could do the same thing.
People with a disabilities learn so much throughout their lives; life lessons that able-bodied people rarely get to experience.
Having a disability is definitely difficult, but it’s also one of the richest classrooms a human can experience, too. While these learning experiences are more profound experienced directly, there are some special tokens of wisdom we can pass along.
1) True happiness is really possible in a “broken” body.
Most say they would rather die than live with a disability, which makes me laugh. That’s because most able-bodied people can’t imagine being happy if their body was ever permanently broken. But the truth is that the human brain is very adept at transitioning into someone with a disability, if you let it, that is.
I thought I would never be happy again. But a few years after becoming paralyzed, I was happy. I found happiness through simply being alive, and through family and friends. I still wish I could walk again, but true happiness resides in me.
2) Patience can get you through almost anything.
You’re told as a little kid how important patience is and as an adult you come to see how true this really is. But when you have a disability, the patience required is at a whole new level. Very often we have to wait longer for all types of things and over time we become masters at honing in on it. Patience has even helped me emotionally get over my physical inabilities in certain occasions.
3) Accidents can and will happen.
When you hear about people becoming disabled through an accident, you always think it could never happen to you, and you almost look at it like a TV show or movie — something that could never be your reality. But the cold-hard truth is that accidents that cause disabilities happen every day, and they could likely happen to you or someone you know. The realness of this possibility is tangible in all lives, but when you have a disability you’re just a bit more aware of it.
4) Disability can happen to anyone.
Maybe no congenital disabilities run your family, but say your first baby had cerebral palsy. It’s shocking suddenly finding yourself in the camp of either being disabled or the family member of one. The wisdom here is to never forget we are all imperfect physical beings, and to never think you’re exempt. We will all die one day and we’re all human.
5) Don’t sweat the little things.
Since having a disability can be rather stressful — broken wheelchairs, health insurance cuts, caregivers suddenly quitting — we learn early on to not let our stress levels get too high. If we did, none of us would make it past 40. We are confronted with crazy things all the time, so we learn to prioritize what is really worth freaking out over. That is why so many of us seem so zen-like. The movie is sold out? The restaurant has a two-hour wait? No biggie. It could always be worse.
6) Being different is an opportunity.
Most people don’t like being different or standing out. You have the outgoing Venice Beach type people of the world, but generally most people don’t want to be noticed. However, it’s not as bad as you’d think. In fact, when you live the life as someone who’s different, you learn right away it has its cool moments. You get to meet amazing people and get in on special opportunities. When you’re vanilla, no one notices.
7) Fitting in is overrated.
When you have a disability, you pretty much have a free-for-all card to be exactly who you want to be since fitting in with the “in” crowd is impossible anyways and embracing this can be one of the most freeing feelings ever. You don’t need to fit in to feel good about yourself or to think you “belong.” You belong to yourself, we know this. And that feeling is amazing.
8) You can’t judge a person by their looks.
You hear it all the time, don’t judge a book by its cover. From Stephen Hawking, a man in a wheelchair who can’t speak and is one of the smartest people in the world to Francesco Clark, a quadriplegic and CEO of a huge beauty product company, don’t ever think a disability is equitable to someone who is not impressive or successful. You never know what someone with a disability is capable of.
9) Life is short. Embrace everything.
Having a disability can also, unfortunately, have an impact on your lifespan. For many of us, living to 95 isn’t probably going to happen, which is why most people with disabilities have figured out the secret to life — enjoy each day as if it were our last. We all try to do this in our own way, but many of us fail. People with disabilities however, have gotten it down to an art form, from enjoying the sun rays to a warm cup of coffee, we know how hard life can be so we know how to embrace the good things when they present themselves.
10) Weakness isn’t always a negative
Just like the notion “it takes a village,” being weak or disabled isn’t necessarily a negative thing. When living with a disability, you learn to be OK with receiving help, and over time, many of us realize that we all need help in our own way, even athletes and the President of United States. It’s unavoidable and part of the human experience.
There’s no getting around it, having a disability is certainly a difficult ticket in life, but the life lessons to be had without question make it a near VIP experience. And hey, the free parking is a nice perk, too.
What wisdom have you learned from someone with a disability?