I often wonder why it took me so long to feel comfortable recognising that I had a disability; I suppose that it is because ‘disability’ is a word that can make people feel uncomfortable, and it is seen to be a tragic affliction. I was also worried that people would see me as a helpless victim who should be pitied or patronised.
Merely talking about disability can cause people to become flustered; they worry about what words to use and what terms are viewed as acceptable. I don’t claim to speak for everyone who has a disability, others will have their own opinion on the issue, I merely want to start a conversation; I am an expert on my own situation, but nobody else’s. I want to say from the outset that I know that it is difficult to understand a situation that may not impact your life, and that I am not here to judge anyone; we all make mistakes, and I am still learning too…
A disability is a condition that limits your ability to do certain tasks or participate in everyday activities. I choose to use the word ‘disability’ in relation to my condition, but others may not, and I respect their choice. Words are important, and many people prefer to be called ‘a person with a disability’ rather than a ‘disabled person’; this recognises that they are more than their disability, and that they are people first. However, others feel that this is ignoring who they are and downplaying it; disability is not dehumanising or negative, and it is to be celebrated. Each person has the right to choose the language that they are comfortable with.
However, some words and terms are quite simply outdated, hurtful and offensive; for example, saying that someone is ‘not normal’, or asking ‘What’s wrong with you?’. It goes without saying that disability is not a joke or an insult, and that these slurs can cause a lot of pain to people. People with disabilities have a history of being locked away in institutions, of being part of freak shows, and of having to endure people laughing and gawking at them; so please don’t undermine their desire to be respected and treated with dignity! I choose to make light-hearted jokes about my condition with those close to me (I’ll do anything for a dopamine hit 😊), and I have promised many of my students that I’ll give them a ‘backie’ on my mobility scooter if I ever need to get one, but that has been my choice based on the level of familiarity that I have established with those mentioned. I try to use humour to remove awkwardness around my condition and to normalise conversations about Parkinson’s, but it is under my terms.
None of us know when disability may enter our lives; I wasn’t born with a disability, but I acquired one in my early 40s. I have a disability that is both visible and invisible, and many of my symptoms cannot be seen by others. However, I am still a productive member of society, I continue to work, I do need extra support, but I am not a burden or a complainer, and my rights should be equal to everyone else’s. I should not have to worry about issues of accessibility; people without a permit should not be parking in accessible parking spaces because they are just popping into the shop for a minute, or because they couldn’t see anyone who needed it. It might be inconvenient for you to have to walk further, but I would give anything to be able to do that walk. Equally, people should not assume that I don’t need accessible parking just because I am in my 40s, have tried to dress well that day, and have Beyonce on full blast; disability does not have a dress code. I am not looking for sympathy, special treatment, or perks, just awareness.
I am always happy to answer questions if they are asked respectfully; I am passionate about raising awareness and I have chosen to put myself ‘out there’, but others have the right to privacy if they so choose. I also appreciate people offering to help me, sometimes I need the help and other times I don’t, but I always acknowledge it as an act of kindness. However, I would advise that if someone kindly states that they can manage, then just respect their wishes, and don’t insist on stepping in to rescue or disempower them.
I want to once again stress that these thoughts are just my perspective on disability, and I too have said and done things that I wouldn’t do again; I do better when I know better. I am now trying to be more aware of how my words and actions can impact others, but it is an ongoing process, and I am constantly learning. I am unable to cover every issue, and I don’t have all the answers, but my hope is that this blog will encourage others to reflect on what it means to have a disability in an ableist society, to understand the powerful ripple effect of informed conversation, and finally, to call out unacceptable behaviour when it is safe to do so.
Thanks for listening!
Great read as always Melanie!
Inspirational and insightful x
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Thanks so much Mairead. I really appreciate your support as always 💋
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