On Identifying As Disabled

I’ve had a chronic illness since the age of 11, yet identifying as disabled is something I have never done until very recently. So what has changed? To start off with, let’s consult the dictionary for the definition of the word ‘disabled’.

Interestingly, there are variations in the definitions across the different dictionaries. The Collins Dictionary defines disabled as being “lacking in one or more physical powers, such as the ability to walk or coordinate one’s movements, as from the effects of a disease or accident, or through mental impairment.” This is the definition I probably would have used when I as at school. It feels a little outdated now though. In comparison, the Oxford Dictionary defines disability as “a physical or mental condition that limits a person’s movements, senses or activities.”

transitional outfit, regain self confidence, identifying as disabled

My basilar type migraine started when I was 11. I never saw this as a disability and, when asked about it I would always refer to it as a medical condition. I think this happened for two reasons. The first and probably most prominent for me is that I’m stubborn. I don’t like admitting that something is wrong or I need help. Since I became ill I’ve always known that I have to push harder than most others to achieve the same results. I was determined to do just that without any additional help. I think I viewed the label of ‘disabled’ as a barrier, which is not a surprise with the way people with disabilities are still viewed.

I would definitely class my migraine as a disability under the Oxford dictionary’s definition. I am limited by my lack of ability to drive (I’m not allowed to as I loose consciousness). I’m also unable to be under certain sources of light. This can be very problematic, especially when out in an area I’m less familiar with. I also need to wear specialist glasses which, whilst they aren’t directly a mobility aid, they do serve to allow me to participate in life much more than I would if I didn’t have them.

Embracing My Differences, identifying as disabled,

You’d think receiving Disabled Students Allowance to buy specialist equipment would have been the giveaway that I was disabled, but it wasn’t! Neither was my disabled rail card. Maybe it’s partly because I have a family member who is a permanent wheelchair user. So that was what I attributed disability to be, as that was what society taught me. I don’t think her comments, which made their way back to me via another family member, about how I shouldn’t be applying for a disabled car badge helped me accept the difficulties my Ehlers-Danlos Syndrome poses. After all, you would think she would understand that other than those closes to you, people never see the extent of your struggles.

transitional outfit, visible vs invisible disability, identifying as disabled,

I know some of my resistance to identifying as disabled was down to the stigma attached to it. I never wanted to tick the “do you consider yourself to have a disability?” box on job applications. I always thought it would damage my chances of getting a job. I know I’m going to sound very cynical when I say this, but how many people are passed over for jobs because of their disability?

I know it’s illegal to discriminate, but if a company sees you’ve put that you have a disability on your application what are the chances that they’ll even invite you to an interview? Especially as the types of disability are so vast that they really don’t know what you’re capable of or what is limiting for you. They will make a quick decision on whether to proceed to the next step based on your application. Unfortunately, they can easily say “another candidate was more suitable for the position” and leave it at that to get round the issue of equality. So I didn’t want to give anyone a reason to pass over me.

Metaphorical Coffee, Visible Vs Invisible Disability And Chronic Illness, identifying as disabled,

When I was at music college, I applied for five jobs. In each of the interviews I mentioned my health. I didn’t get the job. The next three jobs I interviewed for I didn’t mention my health. I ended up being offered all three jobs! This could have been a coincidence, but I think it highly unlikely. I also previously saw disability as a part of the body that was missing or didn’t work properly and chronic illness as something separate, where as chronic illness can actually cause disability. The two aren’t mutually exclusive.

There were a few things that changed my view on how I identify. Getting my crutches has definitely had an impact as it made me realise that my mobility was impaired.

A big thing that has impact on my identifying as disabled has been my friends who are disabled because of their chronic illnesses. Not only did they help me make the decision to start using crutches, they also showed me that chronic illness and disability can go hand in hand.

Identifying as disabled

I cam across Chloe, from Unexpected Songbird, in one of the EDS Facebook support groups and we quickly became friends! Chloe was the first person I heard refer to Ehlers-Dalos Syndrome as a disability. This was the beginning of my understanding of illnesses also being disabling. I’d never thought of an illness or disease causing disability before! This planted the seed in my mind which began to grow with the help of others, including my real life friend Heather (who I also met through the same support group and lives where I grew up!). Heather has been a huge support to me and shared her experiences of Gasrtoparesis with you for Gastroparesis Awareness Month.

Identifying as disabled

It was the lovely Sarah from Sarah In Wonderland who’s Spoonie Struggle: Explaining My Disability To Others post was a real turning point for me. I related to it on so many levels. Sarah talks about avoiding admitting her disability to others in order to avoid admitting it to herself. This is how I have lived my life for the past 18 years. Her final statement “My name is Sarah and I’m disabled. My disability doesn’t define me, it has shaped me in many ways and I am much stronger because of it but it is not who I am” is a powerful one.

Identifying as disabled

Another friend who has been instrumental in my identifying as disabled is Beth from Mermaid in Disguise. Her post on Wheelchair Freedom really helped me to understand just how much my glasses have aided me and improved my quality of life, which in turn helped me with identifying as disabled as a result of my migraine.

Identifying as disabled

Rachel from Happy Little Syllables has also been a huge inspiration to me. She was the first person I spoke to when I felt I needed extra support when moving around, as I knew she uses a cane on bad days. Rachel’s strong and well articulated opinions on disability helped me accept that I have a right to the support and mobility aids that would help me live a better life. She also helped me see that people wouldn’t judge me as a result of mobility aids (and those who did don’t deserve my time anyway), as well as understanding that the majority of people would be more sympathetic and understanding when they could obviously see something was wrong with me.

Identifying as disabled

Jo from JB Occupational Therapy has shown me that disability doesn’t mean that you’re unable to participate in life, it just means you need adaptations to be made. Jo plays wheelchair basketball, trampolines and does yoga. All of which she adapts to make suitable for her with her conditions, which include EDS and PoTS.

Identifying As Disabled

The first disabled blogger I came across was the lovely Hayley from Hayley-Eszti. Hayley’s wheelchair fashion posts are amazing, like her Heels On Wheels post. I was blown away by Hayley she talks about her struggles with ME and her need for a wheelchair so honestly. As well as being a great blogger, Hayley is also an amazing model. Her blog and her friendship have helped me see that there is so much you can achieve, even when your body decides it doesn’t want to play nice!

The final validation I needed came from Dan. A comment he made earlier this month aided the shift in my identity. We had chosen our Christmas tree and were heading out of the garden centre. We went through the door closest to the car park that had an ‘Entrance Only’ sign on it. I pointed this out to Dan, who responded with “well I’m not about to make my clearly disabled wife walk to the other end of the garden centre just to use the correct door!”

Cold Shoulder Strappy Jumper, identifying as disabled,

Some of the things I’ve said about myself before identifying as disabled might sound prejudice, if that’s the case it’s just because they have been badly worded. I have never had anything but respect for those with disabilities. It has just taken me a while to identify as such myself, because I’m stubborn and society in general is less than accepting of those who are ‘different’. I have experienced this a number of times with my migraine and the glasses I wear to help (you can read about one such experience in my disability discrimination post). So it’s not surprising I have had a hard time identifying as disabled.

If you want to read about another person’s experience of identifying as disabled, I can highly recommend checking out Amy’s post on apffdjourney.wordpress.com.

Special thanks to all the lovely ladies for allowing me to use their images. Please go and check them out!

What do you identify as? Has your identity changed during your life?

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Tania Jayne

  • Charlotte Gransden

    I have a lot of blogs I need to check out after seeing this post!

    • Tania Jayne

      Yes you do Charlotte! I love all of the ladies I’ve mentioned here, they are amazing friends. Xx

    • Yes you do Charlotte! I love all of the ladies I’ve mentioned here, they are amazing friends. Xx

  • mamasick

    I think I started really accepting the “disabled” label when I began the process of applying to SSDI. It’s really hard to come to terms that you are not able to work any more. Stopping by from Spoonie Bloggers and Vloggers!

    • Tania Jayne

      Thank you so much for stopping by! It really is a hard thing to come to terms with. I am currently only able to teach one or two 1/2hr clarinet/sax lessons a week, which is really hard for me as I trained to be a professional musician. I’m still working to accept that will never be & trying to shift my life’s focus to something else. I just need to work out what! Xx

    • Thank you so much for stopping by! It really is a hard thing to come to terms with. I am currently only able to teach one or two 1/2hr clarinet/sax lessons a week, which is really hard for me as I trained to be a professional musician. I’m still working to accept that will never be & trying to shift my life’s focus to something else. I just need to work out what! Xx

  • A wonderful post, thanks for sharing this with us. I’ll definitely be checking out the bloggers you’ve mentioned.

    I’m very much a spoonie due to chronic fatigue, but whilst my activities are limited by how much energy I have on any given day/hour, I don’t see myself as disabled and I don’t think anyone else does either. Though my boyfriend kindly said over Christmas that I’m very much likely to get worse than better, so maybe I’m heading that way? I don’t know…

    • Tania Jayne

      Thank you so much! I always saw disability as being separate to illness, I don’t know why! Like an accident that injures a persons legs but who continues on in life without other health issues. It was getting to know the wonderful women in this post that really changed my perception of this. I think the way we see ourselves & how we identify is a very personal thing & as long as we choose our own labels that’s all that maters! I really hope you do improve rather than getting worse. I’m always here for you. Xx

    • Thank you so much! I always saw disability as being separate to illness, I don’t know why! Like an accident that injures a persons legs but who continues on in life without other health issues. It was getting to know the wonderful women in this post that really changed my perception of this. I think the way we see ourselves & how we identify is a very personal thing & as long as we choose our own labels that’s all that maters! I really hope you do improve rather than getting worse. I’m always here for you. Xx

  • thewonkyjen

    Thank you for this, I walk most of the time, but find it difficult most of the time and standing for any length of time even harder. Life has been made easier since I caved and purchased myself a pair of ergonomic Dr. Pepper pink crutches for when my back is in spasm.
    I’m now more comfortable using the chairs provided in larger shops like supermarkets when my legs start to give way, and we’re thinking of getting me a lightweight wheelchair in the near future.
    I’ve always been stubborn, I’ve always been proud, I’ve always been worried that my disability somehow makes me less of a person.
    It’s my last job before I became FT disabled that gave me the self confidence to realise that I can do whatever I put my mind to, and I can at least do it with panache if not make it look good (still fighting issues with how I think I physically look)…and that includes being disabled…it’s just a new thing that I can rock the sh*t out of if I so choose! I just need to tell myself that a few more hundred thousand times…I may not be there yet. But I now have faith that I WILL BE!!!!

    Do you think the ladies mentioned will mind if I seek them out on social media channels?

    • Tania Jayne

      You’re welcome! It’s a difficult thing to accept. I’m glad your crutches have made life easier for you, mine have for me too. I felt weird borrowing chairs to start off with too, but without them I wouldn’t be able to get out so it’s the lesser of two evils. I’m waiting on a referral to wheelchair services at the moment, as things are getting more difficult for me. You can be proud of your disability & the struggles you’ve overcome as a result of them! I’m sure the other ladies mentioned would be more than happy to speak on social media when they’re well enough to. Xx

    • You’re welcome! It’s a difficult thing to accept. I’m glad your crutches have made life easier for you, mine have for me too. I felt weird borrowing chairs to start off with too, but without them I wouldn’t be able to get out so it’s the lesser of two evils. I’m waiting on a referral to wheelchair services at the moment, as things are getting more difficult for me. You can be proud of your disability & the struggles you’ve overcome as a result of them! I’m sure the other ladies mentioned would be more than happy to speak on social media when they’re well enough to. Xx

  • I’m so glad it was helpful! You really don’t have anything to worry about, but I understand your concerns. When I started blogging I didn’t wear my glasses in my profile pictures as I wanted to appear ‘normal’. I’d experienced discrimination in my job because of them earlier that year & it really unsettled me. Do let me know when your post is up, I’d love to read it! Xx

  • Tamsin

    I never really considered myself disabled until I applied for PIP and then broke down talking to the assessor when she made me realise how much I was struggling. It’s hard sometimes, admitting things to yourself.

    • Oh sweetie! Hugs. It’s a personal thing & can be hard to get your head around. People identify differently & there’s no right or wrong. <3