Hannah-Rebecca’s Story

Hi everyone,

Apologies for being so absent recently. The joys of working AND studying means this blog had to take a backseat for a while. I hope to be around more regularly from now on.

Today Hannah-Rebecca shares her story and talks about her disability education project: Considering Disability.  She’s a businesswoman and I can certainly learn a thing or two from her. I hope you enjoy reading.

Good afternoon. They call me the Queen of Awesome. I’m joking, they don’t… often. My name is Hannah-Rebecca and I’m a disability consultant. I do lots of other things too but the consultancy is where my heart lies because it allows me to tackle disability discrimination on my own terms. In May 2014 I founded a disability studies journal, called the Considering Disability Journal. I started it after reflecting on my life experiences and coming to terms with my disability identity. I have hereditary multiple exotoses. It’s a rare medical condition, but not rare enough for me to dally about being a sensitive violet (as I would so love to do). It’s a genetic condition in which the bones at my joints and around my skeleton turn outwards and cause all manner of problems. Someone once explained it to me like NF2 for bones – only accurate in very basic laymans terms. It presents differently in people and it is luck of the draw how you end of affected. I’m part of a support group on Facebook, and some people in that group talk about having thirty plus surgeries before they get out of their teens whereas I have only ever had one. I consider it an acquired impairment as it didn’t affect me until I was about thirteen – it had visibly presented since but caused me no pain whatsoever. When I hit puberty, my skeleton thought it was go time and proceeded to cause my endless difficulties – specifically mobility impairment. You can read more about this on my blog, but as I was growing up I had my classmates accuse me of faking my disability, my teachers not believing me and doing nothing to stop my classmates.

I thought about all the microaggressions I experienced; before the term was coined, before I had the vocabulary to articulate what had happened to me. As the osteochrondomas (bony growths) on my knees grew bigger my mobility was restricted, I could use them less. Suddenly, getting from the ground floor to the upper third floor for my Religious Studies class was an impossibility. From the ground floor up two huge flights of stairs for design technology – not happening. What about to the art block? Not a chance. As my impairment began to affect my life more and more, my world shrunk. I stopped being able-bodied, but didn’t yet know I was disabled. I still needed the accommodations that disability makes you need. The lift in our school was vintage – everything short of a cage and an attendant. To operate it, you needed a coveted key. The process of getting one of those wasn’t too bad, but retaining it when the early steps to discrimination started. How on earth does a thirteen year old explain to these adults that, no, this wasn’t a temporary need. No, I can’t tell you when I’ll be returning the key as I don’t magically expect my legs to start working next week. Not happy with my answer? Well threatening to take it back means I can’t get to my classes, which means more trouble for me – I presume you’ll be punishing me for not attending?

I didn’t really fit what they expected of me. I remember them being especially irritated that I let my friends travel in the lift with me on the way to class. An important part of school life is the social time between classes – was I supposed to miss out on this because I needed to use the lift? Did you want me to be contrite and alone in my difference, and isolate myself? Travel to class alone wearing a red ‘d’ on my chest because I couldn’t walk upstairs? No thank you. You’ve just read this whole anecdote and by now, you’re wondering – why is this relevant? What has this got to do with you starting Considering Disability? It’s relevant because of this: the UN Convention on the Rights of Persons with Disabilities. The international treaty which indicates how state parties should behave when protecting the rights of disabled people – article 1 outlines my right to full and equal enjoyment of human rights and fundamental freedoms. Article 3 tells me that I have a right to full and effective participation in society. Article 7 tells me that at that time, I was entitled to enjoy my rights on an equal basis with other [non-disabled] children. Article 24 tells me that there is a goal for my full inclusion in education and my social development. These are just some of the rights outlined in the UNCRPD, the Convention on the Rights of the Child gives me more and the reason this is relevant is because our government signed up to this. Our government made a commitment to fulfil their obligations and protect my rights. But rights aren’t always enforced by corporate entities, some ‘every child matters’ logo wouldn’t protect me from discrimination. People are the key to preventing discrimination and protecting my rights then as a disabled child, and my rights now as an awesome disabled female. You may think the example I’ve given is quite minor, probably doesn’t have enough gravitas to illustrate the point – I was told to keep it light. There are many more serious incidents that I can recount to you about discrimination that I experienced before I even got out of compulsory education. But, I shouldn’t have to go through something serious for you to take my rights seriously. I shouldn’t have to give you a heartwrenching story for you to take action. It should be something you should just do anyway.

I’m not unreasonable. I know it’s hard to expect people do be anti-disability discrimination if they don’t know what it is. It’s hard to protect rights if you don’t know what they are. It’s hard to meet your obligations towards disabled people like myself if you don’t understand why they’re important and why it isn’t just a tickbox exercise. Fundamentally, it comes down to education. That’s why I built Considering Disability. It’s been hard work, and we’ve still got a long way to go but we exist to take the theory of disability and the disability studies knowledge outside the realm of academia and put it in the hands of the people you encounter daily, the people who – when it comes down to it – are responsible for whether or not you experience discrimination. The people who have the potential to enact or prevent; the type of people awareness campaigns are aimed at. Education around disability is so important and yet so absent. Did you teach me in biology about anything other than a biotypical skeleton? Did you teach me in citizenship about disability? No. One in four people in the UK are disabled but I can tell you about every type of drug they taught us about in the event I might accidentally sniff one and become hooked for life. Most people will acquire an impairment throughout their life and attribute it to old age. Disability rights matters then too – people need to understand disability because if they aren’t disabled, the chances are they’ll know someone or interact with someone who is. Considering Disability is about bringing those conversations to the forefront, and promoting disability education for all.

Hannah-Rebecca Joy Guscoth

Website: https://medium.com/@MissGuscoth

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