By Nina Tame in collaboration with
Disability Content Consulting.
Play the audio file read by Nina Tame or discover the full transcript below.
Full transcript.
I’m a 41-year-old Disabled woman. I write it with a capital “D” because it’s something that I now identify as, and I identify as Disabled proudly too, but this wasn’t always the case. I was born with Spina Bifida in 1980. I met all the usual milestones like crawling and walking, just a little later than my toddling peers. And you wouldn’t have known I had a disability unless you saw the large lump on my lower back. I was four years old when another child saw the lump and loudly exclaimed, “Ewwww, what’s that?” It’s funny, I can barely remember what I had for dinner yesterday, but the memory of someone pointing out that a part of me was somehow “wrong” has always stuck with me.
My teenage years saw my Spina Bifida begin to appear in ways it hadn’t before. Spina Bifida causes the nerves in the spine to be a little tangled sometimes. Teenage years with their significant periods of growth can often exacerbate this. So, bladder weakness got worse for me, I began to develop random ulcers on my feet that wouldn’t heal, and we realised after much poking and prodding that I had minimal sensation in my legs. This led to frequent infections and hospital stays—stints on crutches and in a wheelchair, as well as some orthopedic shoes.
God, I hated those shoes. When you’re 14, all you want to do is fit in and be cool. I was not into my regular and huge wide massive boot that I rocked for a bit. It’s funny. I wouldn’t care a carrot now, but teenage me, who didn’t have the greatest set of friends anyway, didn’t want to give anyone cause to laugh at her. I tried to balance it out by impressing people with my party trick – Kicking the wall as hard as I could because I couldn’t feel it. Yes, I ended up breaking my foot.
I’m a 41-year-old Disabled woman. I write it with a capital “D” because it’s something that I now identify as, and I identify as Disabled proudly too, but this wasn’t always the case.
As I got older, left school, moved out of my parents’ house, and became more autonomous, I often continued rejecting the idea that I was disabled… to my health’s detriment. I wouldn’t rest; I’d be discharged from hospital and go straight down the pub. And I once got my mate to help me cut the plaster cast off another broken foot so I could go out dancing. What an absolute menace.
I claimed disability benefits, had a disabled parking badge, used mobility aids on and off but still couldn’t identify with being Disabled. I knew how people viewed disability, the pity, the awkwardness, the mocking. I didn’t want that for me. I didn’t want people to know I had Spina Bifida, to know that I was disabled. So, I kept it hidden as much as possible until a mobility aid became a permanent fixture in my life. My ableism still told me disabled was a “bad thing” to be, so I called myself “differently-abled,” which looking back on it now makes me want to vomit.
Two big things changed everything for me, and they both happened around the same time like a gorgeous gift from the universe. The first was discovering the Disabled community on Instagram. People proudly calling themselves Disabled, people rocking and looking fabulous with their mobility aids– the ones that I had always kept hidden in pictures because, you know, they made me “look disabled.” People sharing their stories, people calling out inaccessibility, people advocating for themselves, and people advocating for others in the community. People creating beautiful art, people supporting and validating each other. I found my community, and in doing so, I embraced a part of myself that I had always thought was wrong.
My ableism still told me disabled was a “bad thing” to be, so I called myself “differently-abled,” which looking back on it now makes me want to vomit.
The second event that changed everything was finding the Social Model of Disability; it allowed me to undo years of internalised ableism. It was like the moment after a terrible breakup when you realise it wasn’t you; it was them all along. I’d always thought my Spina Bifida was “bad.” Being disabled was “bad.” And somehow, being disabled was my fault or that I was an inconvenience and a burden. The Social Model disagrees.
In contrast to the Medical Model, the Social Model states that, yes, I have a medical condition, but it’s the world that disables me. Now don’t get me wrong, that’s not to say that my Spina Bifida doesn’t come with pain and challenges. However, the societal challenges I face often disable me more than my actual disability.
Put me in an accessible shopping center where my wheelchair can zoom around, and I won’t feel disabled in the same way that I do when I can’t physically get in somewhere because it doesn’t have a ramp. Or the ramp is so steep that I need help getting up and down it. I can’t walk, but my wheelchair solves this problem. It’s inaccessibility that’s the disabling thing. Inaccessibility isn’t just for wheelchair users either. Disabled people face a lack of access to adequate health care or a lack of access to communication like braille and captions, as just a couple of examples. There is a lack of quiet places, quiet times, or adequate seating in many busy public spaces. Think of how varied our disabilities are, yet most Disabled people have all probably come across people’s weird at best — hateful at worst — attitudes. These things cause me more hurt, inconvenience, and frustration than not walking ever does.
If we had the same access to work, education, and social lives… If we were paid the same not less than our nondisabled counterparts, if we weren’t penalised for getting married, weren’t the subject of hate crimes, were fairly represented in the world of TV and media, if we all had access to decent health care, access to decent fare and livable social security, then maybe the word disabled wouldn’t even exist? That’s the thing, though. That’s where the Disabled community stems from. That’s the shared Disabled experience. Our conditions can be miles apart, yet we all understand without question what ableism is and the access barriers that come with it.
I found my community, and in doing so, I embraced a part of myself that I had always thought was wrong.
When we deny Disability, when we try to soften it somehow by using terms like “differently-abled” and “handicapable,” we’re erasing the acknowledgment of societal barriers that Disabled people face. It erases an identity, erasing a community of diverse, brilliant people. I remember answering the tired old question of “What’s wrong with you?” with a “Nothing I’m Disabled” only to be met with a well-meaning yet icky “You’re definitely more abled than disabled.” Considering I can’t get into 50% of my local shops, I’d say that definitely isn’t true, Graham.
I’ve found it’s often nondisabled people who are uncomfortable with the word “Disabled.” Considering how “disabled” is the subject of many an ableist slur to insult people, I’m not that surprised. Also, considering when disability is discussed in the mainstream, it’s often not Disabled voices; it’s usually someone who is disability adjacent — doctors or caregivers, etc. For example, “differently-abled” and “special needs” are commonplace terms amongst parents and teachers of Disabled kids. So I’m also not surprised that many nondisabled people don’t know or can’t imagine that many Disabled people identify with being Disabled and that a thriving, diverse Disabled community even exists at all.
Now, of course, Disabled people are not a monolith; the majority of my Disabled peers prefer identity-first language. When you slog for years undoing all the internalised ableism that told you that being disabled was a “bad thing,” you don’t want people to erase that. But of course, not everyone feels this way. Different disabilities and cultures can all impact whether we prefer identity or person-first language. And I would never question how someone chooses to identify themselves.
The idea behind using person-first language was to see the human behind the disability or the person before the disability. However, I would argue that I am still human with my disability. I would argue that my disability runs through all of me, every area of my life, in both positive and more challenging ways. I do not wish to separate myself from my disability because my disability is a neutral thing. My Disabled community isn’t a neutral thing, though. It’s bloody glorious.
When we deny Disability, when we try to soften it somehow by using terms like “differently-abled” and “handicapable,” we’re erasing the acknowledgment of societal barriers that Disabled people face.
So, suppose you’re asking for a clear answer on which terminology (person-first language vs. identity-first language) is right or wrong. In that case, the answer is that there is no right or wrong answer. The exception is when nondisabled people decide that “disabled” is a bad word on behalf of the community. I’ve seen this often; to be inclusive, the term “disabled” is replaced with a gross little euphemism, and the Disabled people who try and educate around this are then completely ignored. Never do that.
The question presented is: How are businesses, companies, and organizations supposed to address Disabled people? I don’t think it’s very complicated — “Disabled people/People with disabilities.” Use both—easy peasy lemon squeezy. And in the event you need to refer to someone as “being disabled” or “having a disability,” and you’re not sure which to use, ask. “Do you prefer Disabled or Person with a disability?”
Amongst my peers, the majority of Disabled people are not uncomfortable with the word Disabled. Still, when you avoid it or try to somehow sugar coat it, it shows us that you are uncomfortable with it, and surely that means that actually, you’re uncomfortable with us?
More about Nina Tame.
Nina Tame (she/her) is a disability mentor, disability advocate, writer, and content creator from the UK. She uses her Instagram account to debunk outdated societal myths about disability and the ways ableism runs throughout herself and her life. Her experience of growing up disabled and parenting a disabled child is a continual influence that runs through her work. With wit, passion, and lots of wheelchair selfies, Nina’s work explores the nuances of the disabled experience while contributing to the growing, diverse, and brilliant online disabled community.
