What It's Like to Become "Disabled"
Most “able-bodied” people don’t think about disability, because they don’t have to. When they do, they rarely think it’s something that will happen to them.
That’s precisely why I wanted to reach out to an old colleague to get her perspective. Stephanie Scawen is a pistol of a woman with the mouth of a sailor and toned upper arms to rival Michelle Obama. She and I worked together at Al Jazeera English in Kuala Lumpur, Malaysia a few years ago. Not only has she spent a majority of her life without a disability; she also has a unique perspective on being diagnosed with Multiple Sclerosis overseas and having more significant symptoms set in while living in developing countries that are not known for treating people with disabilities well.
She is a fellow journalist. So rather than having me write about her, she was wonderful enough to tell her story herself. I want to share her story now as we look back at 25 years of the Americans with Disabilities Act to show how far the United States has come and remind us why this law is so important.
So here is Ms. Scawen’s story, in her own words:
ON HER BEGINNING …
I was born in the UK, a scarily long time ago [she’s not quite 50] and brought up outside of London.
I studied journalism after high school. There were no real journalism degrees at the time, so I took a newspaper journalism diploma and began working at 19 on a weekly freesheet – the Hemel Hempstead Herald. Try saying my full name and the newspaper’s without getting tongue twisted!
After a few years I moved to London and began freelancing for the London tabloids (the Sun, Mirror, News of the World). There I met a guy and after a few years of dating we decided to try working overseas. Hong Kong was the first place my partner got a job, so we upped sticks and moved over in July 1996.
ON HER DIAGNOSIS …
My first MS symptoms began just as I was relocating. I didn’t know what it was then of course. But as I arrived in Honkers [Hong Kong] I had pins and needles in both my legs, and my skin was numb to the touch all the way up to my waist.
That was quite scary but the neurologist I saw then passed it off as ‘myelitis’ and said it would go away, which it did.
I wasn’t diagnosed until 2 years later when I was working temporarily in Singapore, with inflammation of the optic nerve. An MRI confirmed the diagnosis.
After I was made redundant [laid off] from my job in HK I spent about a year and a half being a dive bum [scuba diver] in French Polynesia and in the Philippines before Al Jazeera began operations in Kuala Lumpur (KL), Malaysia …. I’m now a Senior Producer/Reporter with them.
I had no disability to start with – the first 15 years or so – and carried on living my life as if I just had this annoying problem that occurred a few times a year.
ON BECOMING “DISABLED”…
The turning point was at the start of the Arab spring in 2011. I was in Doha [Qatar] helping cover the Egyptian protests that brought down Hosni Mubarak My left leg went into spasm, but I did not recognise it at the time as a MS attack, so did nothing about it. By the time my leg started to feel better I realised it was much weaker, but there was nothing I could do about it then.
A second attack at the end of that year left me with ‘drop foot’ and meant I had to start using a stick to walk securely without falling.
ON DISCRIMINATION AT WORK…
Up until this point, I had never mentioned to anyone except very close friends of my illness, mostly because I experienced discrimination from the outset. The HR manager of the company I was working for in Singapore [when first diagnosed] told the managers that ‘I would be too expensive to keep on’; so my contract was not renewed. (I only found out that later after I had returned to HK). I had by then got another much more rewarding job with Star TV.
I remember running into someone from the Singapore company some years later in HK, and I remember him seeming quite surprised that I looked completely normal …
It was very recently that I discovered true discrimination at Al Jazeera when someone complained that I was a safety hazard in the field because I needed to use a stick, which was completely ridiculous as I did not cover war zones (never wanted to) or anything which might require me to move quickly. This still rankles with me big time, as this person had never ever discussed my walking with me directly, and had just gone behind my back.
I had to tell my boss the entire picture, which I was not obligated to do legally, but I felt I was forced to. And as I have become more disabled I feel that attitudes towards my illness have hardened against me. I’m seen as ‘a problem’ not a person who has to take a bit more time doing something, or has to do things slightly differently.
People are amazingly narrow-minded. I’m not sure if this is because they can’t picture themselves in my situation, or because they think I should be tucked up in a nursing home. People don’t seem to believe that I still have a brain which works perfectly well cognitively and a mouth that is willing to explain my life to them if they bothered to ask.
Sadly people just assume...
Get the full story at Center for Family Involvement.
http://centerforfamilyinvolvementblog.org/2015/07/30/what-its-like-to-become-disabled/
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