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 It feels a little outdated now though.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.”
My basilar type migraine started when I was 11. I never saw this as a disability &, when asked about it I would always refer to it as a medical condition. I think this happened for two reasons. The first & 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.
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 (as opposed to part time), so that was what I attributed disability to be. 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.
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” & 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. 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 & 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 & disability can go hand in hand.
I cam across Chloe, from Unexpected Songbird, in one of the EDS Facebook support groups & 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 & lives where I grew up!). Heather has been a huge support to me & shared her experiences of Gasrtoparesis with you for Gastroparesis Awareness Month.
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.
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 & improved my quality of life, which in turn helped me with identifying as disabled as a result of my migraine.
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 & well articulated opinions on disability helped me accept that I have a right to the support & 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 (& those who did don’t deserve my time anyway), as well as understanding that the majority of people would be more sympathetic & understanding when they could obviously see something was wrong. with me
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 & does yoga, all of which she adapts to make suitable for her with her conditions, which include EDS & PoTS.
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 how she talks about her struggles with ME & her need for a wheelchair so honestly. As well as being a great blogger, Hayley is also an amazing model. Her blog & 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 & 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!”
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 & society in general are less than accepting of those who are ‘different’. I have experienced this a number of times with my migraine & 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 & check them out!
What do you identify as? Has your identity changed during your life?
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