I first off want to thank you for the positive feedback I received on my last blog post. It was one regarding the exploitation of disability – and yet again I am here to call out those who are doing just that.
Ehlers Danlos Syndrome is a genetic condition causing a defect in the gene which produces a protein called collagen. This results in our connective tissues (muscles, ligaments, skin, tendons etc.) being stretchy and dysfunctional.
Furthermore 90% of people with EDS experience chronic pain, and I am one of them. For me, EDS, along with my comorbid conditions, are debilitating and affect my ability to function. As a result, I rely upon a manual wheelchair to get around and explore the city I love – Newcastle upon Tyne UK.
On July 28th I reunited with a friend from college, and whilst sitting at Grey’s Monument we were approached by a man wearing a shirt reading ‘fearless Christianity’. He wanted to talk about God, and I tried to shut him down as I knew what was to come, that he was going to talk to me about the power of Christ. I feared that they would see my pride flag badge and try to convert me.
However, he proceeded to ask if he could ask why I was in a wheelchair. Now naively I thought he may have been on a mission to educate himself about the experiences of disabled individuals, however, no…he wanted to know for another reason entirely.
Eagerly I explained what Ehlers Danlos Syndrome is, but rather than listen to what I had to say after being the one to ask the question in the first place, he interrupted me, and after I tried to explain that my condition was incurable, I swear to you this is what he said in response:
That’s a load of rubbish, nothing is incurable in the eyes of God.
When I tell you that I have never been more insulted in my damn life…this man asked me to explain my disability, came up to me after deliberately targeting me because I was sat in a wheelchair, minding my own damn business, and then told me I was wrong.
You didn’t even know what my condition was a few minutes ago, I tried to educate you about the nature of my condition which has changed the course of my life.
My disability has seen me attend countless hospital appointments, spend my 15th birthday in the hospital, undergo numerous scans, enquire about hip surgery at age 19, cry myself to sleep because my spine is twisting against itself, caused depressive episodes, faint at least 20 times this year, suffered at least 8 dislocations this year. My experiences and my understanding of my own body are NOT for you to attempt to discredit by claiming your aunt had a disability to.
So you’re probably thinking, how could this get any worse? Well, how about if I told you, readers, that Fearless Christianity referred to me as a cripple. I was in true disbelief and felt furious on behalf of the disabled community who had been subjected to such displays of degradation. No matter what I did I couldn’t harness the power of my passion and tell him to go away and leave me and my friend alone.
Nevertheless, I attempted to educate someone about the terminology to use, and cripple was certainly not something an able-bodied person can refer to a disabled individual as being. Yet rather than take this on board and apologise, you ‘apologised’ and proceeded to try and explain that your aunt’s surgeon said that she no longer needed surgery after a miraculous recovery after attending a church prayer.
Clearly this man has a God complex and in my opinion, has the makings of a true narcissist, why? Because after apologising to me he continued to prey upon the innocent disabled individuals around the city of Newcastle who only wanted to go about their lives. You are fuelling societal ableism, negative stereotypes of the disabled community, and using inappropriate language when addressing us. You are placing your hands on those who haven’t given consent. How do I know this you may ask? Because you did it to me. You placed your hands on my head and ‘prayed’ for me to be released of my burden.
Well, guess what Fearless Christianity, it didn’t work, and when I asked you why you were doing this, why if God could heal me had I suffered – you remarked that:
It’s for God’s glory.
Is it for God’s glory that every injustice that disabled folk experience, the financial hardships we endure, and the physical and emotional pain we suffer is for an omnipresent being’s glory? How sick and twisted is that, and why would you want to worship such a God?!
I can laugh about it now because I see how absolutely ridiculous the situation was, but that isn’t without acknowledging how dangerous such displays of degrading performances are.
My genes cannot be altered. This is who I am, and it’s part of my life – I have accepted it because I know that I either live a life with EDS in denial, or I embrace it and make positive changes. You made me feel like I wasn’t doing anything to help myself, and you have no clue how much myself and my family have done, the lengths we have gone to in order to accommodate my disability, to improve my wellbeing, and better my situation.
How do you think it makes those with incurable illnesses, or any illness for that matter, feel when you put your hands on us within consent, tell us we are wrong – implying we are uninformed about our bodies – and for you to promise our pain will go away? To plug your Instagram profile and ask if I could get in touch if I thought my pain was better? Like shit dude, that’s how we feel. The majority of us have experienced medical negligence in some form, whether a medical professional has turned us away because they don’t know what’s wrong with us, have tried to say there isn’t anything wrong because you don’t fit the criteria of the most common conditions they see in their clinics or try to say we aren’t doing good enough to further our recovery. This can be traumatising and leave people with severe anxiety about visiting the hospital because they’re scared they’re going to face this behaviour again – as it’s degrading, humiliating, and truly insulting. You wouldn’t believe how many of us have medical-related PTSD in some form, so many it’s appalling. So rather than exercise your ego and attempt to exploit the disabled, don’t.
If you or someone you know has experienced disability discrimination or has been affected by the matters discussed in this post, please see the list of organisations which offer advice, informative resources, and support.
Equality and Human Rights Commission
Mind UK (mental health)
Samaritans (mental health)
- Helpline – 116 123 (24hrs)
firstname.lastname@example.org – response time can be up to a day
Want to catch up with the whole EDS Chronicles series?