Last month, Crohn’s & Colitis UK launched the next phase of their Not Every Disability is Visible campaign. It opened up a really interesting discussion as to what disability is and led me to question whether I am disabled.
I did a twitter poll where nearly 1000* of you voted/replied whether, because of your chronic illness, you identified as being disabled. 60% voted no and 40% voted yes.
People with invisible chronic illnesses – do you identify as disabled? (Feel free to reply with why you think that way ?)
— ✨ Katie May ✨ (@katieemay1) April 18, 2019
I saw @ThailaSkye talking about this on Instagram & I thought I’d carry on the conversation here!@CrohnsColitisUK #NotEveryDisabilityIsVisible #Spoonies
However the poll I did on Instagram stories (with 397 votes) the split was the exact opposite way around.
*931 participants in the poll
What is a disability?
If you’d asked me 8 years ago whether I would be questioning whether I had a disability I’d have laughed. Surely you know if you have a disability?
There is a real pre-conception as to what a disability is. I think society has conditioned us to this of disability as someone who needs a wheelchair or permanent walking aids; in reality that’s not true at all!
Disability is defined in the dictionary as;
(1) a physical or mental condition that limits a person’s movements, senses, or activities.
(2) a disadvantage or handicap, especially one imposed or recognized by the law.
The first part of this definition fits in with the more traditional idea of what a disability is, however, there is a wider definition which is used in law.
The Equality Act 2010, which ensures that you aren’t discriminated against, defines disability as;
(a) has a physical or mental impairment, and
(b) the impairment has a substantial and long-term adverse effect on a persons ability to carry out normal day-to-day activities.
The Equality Act s 6 (1)
The definition in the Equality Act 2010 is slightly wider and does encompass more long term health conditions.
The grey area of chronic illness
One of the biggest comments I received from the poll was that sometimes people felt disabled, other times they didn’t.
Some people who found remission from their chronic illnesses said no but those who haven’t found remission say yes.
The biggest takeaway from the poll was that those of us with a chronic illness need a sometimes box.
However, when you look at the guidance to the Equality Act 2010, they expand on the concept of what impairment means. It says that;
A disability can arise from a wide range of impairments which can be:
Equality Act 2010 Guidance
sensory impairments, such as those affecting sight or hearing;
impairments with fluctuating or recurring effects such; as rheumatoid arthritis, myalgic encephalitis (ME), chronic fatigue syndrome (CFS), fibromyalgia, depression and epilepsy;
progressive, such as motor neurone disease, muscular dystrophy, and forms of dementia;
auto-immune conditions such as systemic lupuserythematosis (SLE);
organ specific, including respiratory conditions, such as asthma, and cardiovascular diseases, including thrombosis, stroke and heart disease; developmental, such as autistic spectrum disorders (ASD), dyslexia and dyspraxia;
learning disabilities;
mental health conditions with symptoms such as anxiety, low mood, panic attacks, phobias, or unshared perceptions; eating disorders; bipolar affective disorders;obsessive compulsive disorders; personality disorders; post-traumatic stress disorder, and some self-harming behaviour;
mental illnesses, such as depression and schizophrenia;
produced by injury to the body, including to the brain.
“Guidance on matters to be taken into account in determining questions relating to the definition of disability”
There is a real focus on how the impairments affect your day to day lives. This suggests that there is an understanding of invisible/chronic illnesses. It also means that you are protected by the Equality Act 2010
Regardless of whether the legislation
Because of the preconception of what disabilities look like and the lack of understanding people don’t feel like they can use the term disabled.
This is a real issue because people who need to access certain services and help aren’t because they don’t think they can.
Why should I ask the question, Am I Disabled?
Identifying as disabled isn’t just people wanting to be able to tick a box.
Being able to feel comfortable in identifying as disabled allows people with chronic illnesses to be able to access services, benefits and help to improve the quality of life you have.
I remember the first time I ticked the disabled box and I felt SO UNCOMFORTABLE and a complete fraud.
I ticked it when I was applying to university because it said that it included long term health conditions. By ticking that small box, I gained access to a lot of different services at university which helped me succeed. Some of the things I gained were;
- a personal learning plan which meant that the university had plans in place to help me when I would flare up. There were worst-case scenario plans in place for if I was hospitalised. I didn’t have to tell tutors as they already knew because of the plan. I could get work early if I was at hospital appointments and lectures were podcasted so I could access them without actually going in if I was ill.
- Exam conditions changed; I could have regular toilet breaks, take my medication in with me and be in a smaller room
- It was easier to get deadline extensions if I was ill
- I could access the Disabled Student’s Allowance (DSA) which helped pay for en-suite accommodation and other expenses which come with being a disabled student
By ticking that small box, I was given so much extra support which helped me have a better university experience. This is why I’m such an advocate for allowing yourself to identify as disabled when you have a chronic illness.
Whether it’s accessing benefits such as PIP or getting extra support in the workplace, allowing yourself to be comfortable using the term disabled can help you so much!
Don’t forget to sign up to the Chronically Living newsletter which is relaunching Sunday 19th May 2019 and get a FREE spoonie checklist to help you on the bad days!
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