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.

ON LIVING AND TRAVELING WITH A DISABILITY…

I don’t think there’s anywhere that is perfect for disabled people, especially people like me, whose only issue is not appreciating there are limits to what I can do. But it’s also wanting everyone else to appreciate disability.

Malaysia is very backward when it comes to disability. Wheelchair users are not seen nor heard. There are occasional disabled parking spots around town, but half the time these spots are filled with cars operated by able-bodied people who are just too lazy to walk a bit further to the lift.

At the condo where I live I’ve just had to threaten to sue the management company, because they refused to let me install a stairlift to help me get to the lift. They dropped their objections when they had to start physically carrying me up and down the stairs. The condo itself is in breach of Malaysian planning laws regarding disabled access. But Malaysia itself has few anti-discrimination laws, and what there is isn’t retrospective. Even my lawyer says if I were to take someone to court it would be precedent setting if I won the case – that’s how backward things are here.

Take the newest private hospital here in KL. The disabled toilet in the hospital’s public area had nothing to help a wheelchair user – not a single railing. I had to use the toilet roll dispenser as the only thing to grab as I sat down, and pulled that off the wall a few times.

After I complained and sent a photo to the hospital director they finally put in a single railing, which is still not enough, but they then installed a self-closing mechanism on the door, so now I can’t use it at all without someone helping me open the door (it’s impossible if you are in a wheelchair)

Kenya by contrast I found surprisingly more advanced towards disability in some ways. Every street in Nairobi Central Business District has disabled parking, which people respect. And people in general are more accepting of wheelchairs users and non-judgemental in their attitude. Certainly the company I worked for went out of their way to make things as easy as possible for me.

There are still problems obviously. One of the biggest private hospitals in Nairobi – the Aga Khan- has no disabled facilities at all. To go to the loo [bathroom] you have to negotiate your way into a regular stall and leave the door open while you relieve yourself, because you can’t close it. There’s no dignity in disability became my mantra.

In general I find that offices, hotels, shopping malls pay total lip-service to the idea of disability. Architects have a list of boxes to tick but never seem to employ a disabled person to test run their facilities.

I now write to every hotel I stay in a review of their facilities, because what passes for disabled friendly generally isn’t. I should set up a consultancy.

Getting on and off planes can be challenging. Flying back to KL from Nairobi through Doha I was told on check in at Qatar Airlines that the plane was too small to hold an airline wheelchair and the aircrew was not obliged to help me get to the toilet. After I told them they were being completely discriminatory and if they didn’t help I would happily soil the seat they changed their attitude. (This from a so-called five star airline).

It annoys the hell out of me that I even have to use such tactics. Of course I don’t want to soil a seat but it often seems the only way for people to pay attention is to proverbially shout at them and sometimes actually shout. In the end the aircrew did help and at one point there were 3 of us squeezed into a cubicle making me remark we’d set a new record for the Mile-High club. I don’t think they quite saw the joke.

Getting into different planes can either be amusing or humiliating, depending on your point of view. When I was in Kenya I took a trip to the Maasai Mara game reserve for safari. I took a flight rather than endure an 8-hour drive on rough roads. But the plane was a small Twin Otter with the entrance up steps at the back of the plane. Given that my legs are fairly useless for climbing steps the only option was to be man-hauled up the steps one by one; one person held me under the armpits, a second person (the Captain in my case) grabbed my legs.

As I say there’s no dignity in disability, but it’s hard not to see the funny side.

I don’t do public transport anymore. The buses here in KL say they are wheelchair friendly but given the way they drive (when I was able to use public transport) they are not safe to use unless you are 100% able-bodied, and even then you have to take care you’re not thrown to the floor when they brake to avoid a collision.

In London I use black cabs all the time as they have ramps built into the cab, making getting in and out easy. It’s a shame more places don’t have cabs like London black cabs.

One of the few benefits is that as a wheelchair user I get priority check in at airports, and through security.

ON HAVING A SENSE OF HUMOUR…

 Although life is not easy I think that attitude plays an important role. If you think of yourself as disabled you won’t do anything in your life. I stopped looking at MS chat rooms fairly soon after diagnosis because they were all so depressing (My life is over, etc.).

Maybe it’s my ingrained gallows humour after bring a journalist for 30 years, but I have to see, and do see, the funny side of my situation a lot. Laughter is the best medicine, it’s true.

Last year I flipped my chair over while I was in it and smashed my head into the concrete floor. I was stuck, and given how hard I’d hit the floor, decided to call an ambulance in case I’d fractured my skull. There was a big lump forming. I only live less than 10 minutes from the nearest hospital, but after half an hour the ambulance still had not arrived. I called again and was told ‘they can’t find your house’ and had to give detailed directions. When help finally arrived it was about 40 minutes later and I screamed at them: Where the hell have you been? It’s a good job I’m not dying!

My skull incidentally is quite thick it seems. No fracture just a $300 bill for the ambulance and CT scan.

How can anyone not see the funny side in that?

No? Ok, just me then.

ON STRUGGLES AND ADAPTING…

But since making a documentary about having MS [for Al Jazeera] I have done a bit more work with MS societies and I try to respond to any messages from people on Facebook. The documentary recently went out on Al Jazeera’s Balkans service and I’ve been amazed by the number of people asking for help from that region.

Daily struggles – it depends from day to day. Some are good, some not so. Sometimes I can’t get my socks on, or my shoes on and I’ll want to scream. Other days I feel like there’s nothing wrong with me, and it’s on days like those I get frustrated when I’m reminded that I can’t run marathons any more.

If someone wants to meet up for a drink or dinner I have to think of somewhere where I can get to easily in a chair; if I’m driving if there is valet parking where I can get someone to get the chair out the car and help me into it.

I had my car converted to hand control last year, which has been a godsend. I would go mad if I had to rely on Kl’s crappy taxis.

ON BEING STEPH…

I often steer my wheelchair directly into people whose noses are in their Iphones and not looking where they are going.

I once threw my walking stick at a car coming out of a car park [parking lot] in KL because I could see the driver talking on his phone and not looking at what was in front of him. He stopped when the stick hit the bonnet [hood]. A bit extreme I admit, but maybe he learned something.

ON THE HARDEST THING…

For me the hardest thing about becoming disabled was to say it to myself. It took me about a year to say the words: ‘I am disabled’, In my heart I still don’t think of myself as disabled, just someone with extra challenges, and I think that annoys other people more.

They want to put me in the ‘disabled’ box, and that by their definition is someone who can’t do anything any more.

Maybe because I refuse to be a victim it frustrates others, because they can’t see themselves in my situation. Just this lunchtime someone said to me: ‘You were so brave going to Kenya’

Sure it was flattering but I think: Why? What was so brave about it?

I don’t see myself as having limitations, it’s other people that think I have them. People make massive assumptions all the time and don’t consider my own opinion as worthy of consideration, as if I’m incapable of making a rational decision all by myself. They don’t or can’t see that there is always another way of doing something.

Once when I was getting on a plane (I was walking with a stick then) and a guy behind me asked the steward before me: Is she going to take much longer? Completely ignoring me. I responded: She will take as long as she damn well likes. And she’s not deaf or dumb or stupid… kindly treat me like everyone else.’

ON ADVICE…

What would I tell the old me? I’m not sure. Live in the now, because you never know what’s coming next, maybe.

The best piece of advice I was ever given was: Say yes to everything. And that works for me. If I’d not taken the leap to go work in Tahiti I certainly couldn’t do it now, and the same goes for Kenya. If I’d not gone there I would never have met the guy I now plan to marry.

So in the words of Maya Angelou, there’s a massive difference between living and having a life. And I’m not going to apologise to anyone who thinks that I can’t have that.