When is being defined by your disability a good thing? Is it a good thing to be defined by your disability? Or not? You may have a disability and think, ’Yes, I have a disability.’ But you may not consider yourself disabled.

I’ve been discussing these questions recently with people and have also come across them in the press.

They are not questions for which a straightforward answer is easy. Identity and disability are complex topics. You can write a book on it. So I will only scratch the surface in this blog.

What I do is share real life examples of how people view their disability. And from that the three things which can influence your thinking about being defined by your disability (or not).

When is being defined by your #disability a good thing? Is it ever a good thing? Tell a friend

‘I have a disability, but I don’t consider myself disabled.’

I heard this a month ago at a bladder and bowel support group I attend. The person who said it has a colostomy bag. (I have this person’s permission to mention what they said in this blog.) A colostomy bag collects a person’s poo because they are unable to pass it through the rest of their intestines and then out their rectum (for any number of reasons).

Looking at this person you would not know they have a colostomy bag. They go to work, see their friends, enjoy their hobbies, etc, etc. They are living their life. They just empty their waste through a bag, that’s all.

My other half also says he doesn’t consider himself to have a disability – he has diabetes and is insulin dependent. Looking at my husband, you wouldn’t know he has diabetes. He works full-time, enjoys his hobbies, etc. However, I know the changes he has had to make and they have not always been easy for him.

I often hear from people whose disabilities are not readily visible

Like having a colostomy bag or diabetes. Some of these people are able to continue their lives from an outsider’s perspective nearly the same as before the disability’s onset.

But also, if someone has depression or bi-polar disorder, they go to work, have a family, go out with their friends, smile and laugh, have hobbies. For people who experience depression, they may not experience it all of the time. Bi-polar can also fluctuate and at times the person may be going through a period where they don’t experience the depressive or manic phases.

In the above examples, the disability can be invisible or just not visually prominent at times and the person may not think of themselves as disabled. They are getting on with their lives and dealing ably with the impact of their disability.

I have a disability but I don’t consider myself disabled.’ – I’ve heard this a fair number of times from people with a #disability and write about it here. Tell a friend

But what about disabilities that are visible?

Society’s view of disability has traditionally been that a disability is visible, i.e. a person using a wheelchair or other aids for example. The disability has to be visible for a person to be considered disabled. (But that is an older view of disability which is changing.) So you would think a person can’t help being defined by their disability, right?

A picture of four people representing society point at a man using sticks to walk. The four people are saying, "You have a disability, you are disabled." The man is saying, "Uhm, I have a disability but I don't think of myself as disabled." The pic also contains the questions: When is being defined by your disability a good thing? And who is doing the defining?

You may become known as the person ‘in the wheelchair’ or who ‘has a blade’, or ‘uses a stick’ and/or a scooter. You yourself know that you are different from many of the people around you. That difference stands out and it is often the first thing people see and often react to.

Ellen Blunsdon, a student in Edinburgh, noticed people were looking at her more and she got more comments from the public when she started to use her walking stick routinely.

Maybe you don’t mind being defined by your disability in this way

I have heard people say, ‘My wheelchair is a part of me, it’s an extension of my body.’ In Ellen’s case, she loves her six walking sticks because she sees them as an extension of her body and something she can express her identity with.

I have also heard people say that their disability has played in a role in shaping the person they are today and has provided the opportunities to do things they enjoy in their life.

I remember meeting a guy who described the day he sustained a spinal cord injury (due to a car crash) as his birthday. He also said that he would not go back to his previous life.

Or the disability is seen as a bad and unfortunate thing to have happened but not the end of the world. For example, Kristina Vogel, the cyclist who sustained a spinal cord injury in 2018 in a cycling accident and is now wheelchair dependent said in this BBC article, “I still love my life. So nothing changed, really. Just how I move. I’m going to do a lot of things in my wheelchair. It’s different, but it’s still my life…”

Kristina Vogel’s gives a matter-of-fact description of her situation. I have heard many people who use wheelchairs say that all that has changed is how they get around and do some activities. Like Kristina, they now use wheels rather than their legs. For them, the rest of their life is similar to as it was before: they go to work, love, laugh, cook, have hobbies, etc.

They’ve adapted to regain their abilities to do the things they want in life. And they’ve found new ways to be able. So saying they are ‘disabled’ feels a misnomer. I feel they have ‘re-enabled’ themselves. They too are getting on with their lives and dealing ably with the impact of the changes to their body.

The pic shows three people with various disabilities and it's about them regaining abilities and regaining new ones after the onset of a disability. The man in the wheelchair is saying, "I've taken up painting as a hobby and I have my first exhibition." The woman who uses sticks is saying, "I still work as an engineer." A younger woman is saying, "I've managed to go to university even though I have chronic fatigue syndrome. I won't finish uni with my friends but I will finish."

Or you may mind being defined by your disability

You may wish people would see past your wheelchair, prosthetic, blindness, deafness, diabetes and see you for who you are as a person, your sense of humour, your skills, your achievements, likes and dislikes.

Or you worry about ‘coming out’ with your disability, concerned that people you have known for a very long time may treat you differently, as in the case of the student Ellen mentioned previously.

Or you mind being defined by your disability but you’re aware of the benefits and opportunities it has brought you

Billy Monger’s story demonstrates this point. He was rising up the ranks in the motor racing world when he lost his legs in an accident on the track in 2017. The racing world rallied around him to help and he ‘found himself transformed from just another driver on the rise, to a symbol of triumph over adversity’.

But ‘Billy wants to be known as a racing driver and “not the guy who drives with no legs”’.

‘“Before the accident, I was desperate to get my name out there. Now, everyone knows who I am, but in my head, it’s not for the right reasons,” he says.’

‘He’s conflicted because, in some ways, Billy knows he needs the spotlight now more than ever’ to move ahead in motor racing. His accident and consequent disability has given him the spotlight he needed.

Not only can you have the conflict of recognising the good things that happened and opportunities that have come your way due to your disability, but you also want to be recognised for yourself and your abilities regardless of the disability.

You can also have another conflict like Billy said in the article, and I’ve heard from others – In some circumstances they would go back to their old life if they could. You may feel the same.

This is what could be influencing your thinking about being defined by your disability

Writing the above, three things occurred to me which could potentially influence your thinking around being defined by your disability. And this is by no means an exhaustive list.

  1. What we as a society have associated with the meaning of ‘disability’ and ‘disabled’.
  2. There’s a theme in everything I have written of what other people think and how they respond to disability.
  3. Feeling that one is ‘disabled’ is a very subjective experience. And so it will differ from individual to individual.

I could go into what the law considers to be a disability as per the Equality Act but to keep this blog from getting even longer, I have chosen not to address that. Suffice it to say that if your impairment is considered a disability under the Equality Act, you have an extra layer of protection in the workplace. This is when it may be open about your disability. For guidance on the Equality Act, this is also a useful document.

A man who uses sticks to walk is sitting on an ottoman holding a book titled 'About Disability' and thinking the following: I'm ok with the term disability. I do have a disability, but I still have many capabilities. So I'm not sure I'm disabled. But other people think I'm disabled. It's frustrating when they think I've lost all my abilities. What do we mean by being disabled?" The caption has the question: How do you think about being defined by your disability?

What we as a society have associated with the meaning of ‘disability’ and ‘disabled’

When you look at the word ‘disabled’, there are two parts ‘dis-abled’. And it’s the meaning of the prefix ‘dis’ which sets the tone for the meaning of the word ‘disabled’.

According to the Oxford dictionary, the prefix ‘dis’ can give a word

  • the opposite meaning, e.g. like and dislike
  • express negation, e.g. disadvantage
  • denote reversal or absence of an action or state, e.g. disaffirm
  • denote removal of something, e.g. disbar
  • express completeness or intensification of an unpleasant or unattractive action, e.g. disgruntled

Dictionary.com also defines ‘dis’ as having a ‘privative, negative or reversing force’.

I had to look up ‘privative’ and according to the Oxford Dictionary, it means ‘marked by the absence or loss of some quality or attribute that is normally present’. Dictionary.com refers to privative as ‘causing, or tending to cause, deprivation; consisting in or characterised by the taking away, loss, or lack of something; indicating negation or absence’.

A disability in the context of our bodies means that we don’t have (from birth) or lost some functionality whether that is physical and/or mental.

There are two parts to the word ‘disabled’ – 'dis' and 'abled'. The prefix ‘dis’ means loss, deprivation, negation, absence. No wonder people say, ‘I have a #disability but don’t consider myself #disabled.’ Who wants such… Tell a friend

But given the meaning of ‘dis’ has negative connotations, a sense of negativity has been associated with disability

That it’s negative to lose functionality. It may very well be, don’t get me wrong. In general, we don’t like losing stuff. But also, when we lose functionality, we are then different from the majority of people around us. And society doesn’t always deal well with difference.

This negativity is often inherent in the everyday language people use to describe disability. For examples of this, read the article about Ellen where there are assumptions that disability is associated with not looking pretty or older age. There is also the issue that if you have a physical disability, people will assume you can’t speak for yourself or are also impacted mentally.

Most people don’t want something negative associated with themselves and their abilities. So it’s understandable that someone who has a disability may not consider themselves disabled.

People often don’t want negativity associated with their disability. Take Billy Monger mentioned above. He wants to be known for his skills first, not his disability. First and foremost, he is a human being with a career path, hopes, dreams, likes, dislikes, etc. He just happens to move around differently.

So I come back to the point I made earlier about ‘disabled’ not being quite right when people have adapted how they approach every-day activities and found new ways of being able.

What other people think and how they respond to disability

As in Ellen’s story, sometimes Joe and Jane Public can do an excellent job of sometimes inadvertently, but also overtly, disabling the person with the disability. This often happens by what they do and say, and the assumptions which underpin what they say.

For example, being told you’re inspirational for doing something normal like going shopping in your wheelchair can be frustrating. You may have worked hard to return to the every-day normal activity of shopping so you could live an independent life like everyone else around you.

What is different about you is pointed out to you and you are fully aware of this difference. But the underlying assumptions of what people say can be patronising and disabling. Take the common saying:

“I think you’re inspirational for doing your food shopping!”

The possible assumptions could be:

  • “Poor you! It must be awful to have to use a wheelchair/stick!” – This comes across as patronising. It can also be a subtle way of the speaker saying, ‘You are worse off than me.’ One person is greater, one person is less than.
  • “Wouldn’t it be easier for you to have it delivered?” – This could be a subtle discount of the person’s abilities to do their own shopping in a wheelchair.
  • “I could never do that. That must be so hard. I find it amazing you can.” – If you ever become injured or ill which causes a disability, you may need to find a way yourself.

But you can have the opposite experience as in Billy’s story where people rally around you and support you to return to as full and active life. And people treat you the same as any other person.

Feeling that one is ‘disabled’ is a very subjective experience

Every person is different. You may mind being defined by your disability, or you may not.

You may define another person by their disability, but they may not do that for themselves.

You may not mind being defined by your disability, but you may very much mind the impact of having a disability means for getting out and about and contributing in our society as Hannah Cockroft points out so well in this video. Our built environment is certainly not accessible to everyone no matter the disability they have.

You may not want to be defined by your disability but appreciate what you’ve learned or gained as a result of your life post illness or injury which now defines you.

You may or may not mind being defined by your disability but you wouldn’t hesitate to return to your life pre-disability if you could.

So when is being defined by your disability a good thing?

It depends. There can be so many responses to this. It’s not an either-or issue. There is no right or wrong way to be. Whether or not you feel defined by your disability and whether that is a good thing or not is a very individual experience.

The picture contains a box on the left which has Good in it and a box on the right which has Not Good in it. There are nine boxes in between and they are various shades of grey. Among the boxes is written: All the shades of grey and contradictions. And the caption says, 'Being defined by your disability can be all of this.' There is a man sitting on the Not Good box saying, "See me for me." There's a woman with mobility sticks standing under the Good box saying, "It helps when a shop or venue is accessible."

What’s it like for you?

What do you consider to be a disability or when someone is disabled? If you have a disability, how do you feel about being defined by your disability? Or a loved one being defined by their disability? Share your thoughts or questions in the comments below or alternatively email them to me (contact form in sidebar).  

If you are living with a serious health issue or are caring for someone who is, and would like support to return to a sense of wellness, have a look at how we can work together and get in touch for a free no obligation consultation.

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© Copyright Barbara Babcock 2019

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