On 3rd November every year is the International Day of People with a Disability (IDPWD). New South Wales celebrates it with the campaign "Don't DIS my ABILITY" celebrating diversity and the abilities of people who live with disabilities. I really like this campaign, I find it wonderful to have such a great celebration of all the things people CAN do, when the emphasis is continually on what people cannot do.
I have been quiet on this blog. Life has been throwing a lot at me, things that I wish like hell I didn't have to deal with. I have been feeling humilated, depressed and frustrated. Not because of my pain, nor from the challenges that normal living brings. The challenges are not from my disability, but from the way that I am "disabled" by others. The humiliation of begging to be able to have the same opportunities as people who are "able". The frustration of living with a condition that people have no understanding of; of having an upper-limb disability that is even less catered for than lower-limb impairments. I am being discriminated against. And that, that is what is making me feel depressed about my life. It is an awful, terrible feeling. It makes me feel ashamed of who I am.
I hate being a victim. I hate being the person who has to bend over backwards in order to live a normal life in a world that is seldom adapted for me. Ever since I had my accident, I worked so hard to adapt myself in a society that didn't care about the "others". I worked myself to breaking point, just so I could find some degree of independence. I was not content to sit back and be a victim to my pain, and I never wanted to be "disabled". If I had any choice, as anyone with a chronic condition knows; I would certainly choose to have my arms back. To be able to do all the things that others do without thinking. But, we cannot turn back the clock, I can never get back what I lost on that fateful day.
Despite all this, I made the best of the situation. I live a good life with my pain. It no longer rules me, nor does it beat me. I have adapted to this new body quite well over the years. However, there are still things that I simply cannot do, and there are things that are possible for me to do, but come at the high price of increased pain and flare-ups of my symptoms. In extraordinary times, I can push myself if I must. The high price of pushing myself too hard, too often; is that I am seeing the longer-term damage it does to my body. Maybe had I not pushed myself to write with my left hand, I might not have problems in my only remaining good arm; no tendon damage now. But I also may not be living overseas, doing something that I love.
I do quite a lot with my hands. I do it because there IS something wrong with them; not just for my own pleasure. Use it or lose it baby! If I hadn't made all this effort to keep them moving as best as I can, I would be a lot more disabled today. It becomes rather consuming, always carrying some toy or ball to play with in my fingers; or finding new hobbies that will help me regain and exercise control of my hands and arms. It is more brain training than for my arms. The more I do these things, the better my symptoms are managed.
Lately, I've taken to knitting; my mother is a knitter as was her mother. It is a nice thing to do which connects me to the women who came before me. I recently have converted to "continental" style knitting, which is much easier (and quicker) on my hands. I spend quite a lot of time making fingerless mits and gloves - something I wear every day, winter and summer.
One of the things that I really cannot do, is write for long periods. I am a writer, so this is something I miss greatly. I use a computer mostly, sometimes even with voice-recognition software when I have some patience and time. I can write with a pen if I take a lot of breaks, pausing frequently to stretch and move around. I need to take my time with it. Considering I was a born right-hander, and my nerve injury was to my right arm; it is actually a miracle I can write at all!
I taught myself to write with my left hand, it was a very long process that took over 2 years to be at the standard that didn't make me want to cringe each time I saw it. People often are surprised at this, as are the doctors and rehabilitation therapists I've seen over the years. No one taught me, I did it all myself because I couldn't bear not doing something. It is one of my achievements I am really proud of. Try it - try to write your name with your non-dominant hand!
So yes, I can write. How well, or how long for is significantly less than it would be if I were "able". My tolerance is limited to about 10 minutes, maybe a page. More than that, or for a longer time makes my pain levels raise to intolerable levels and could set off a flare of my symptoms with contractures, less circulation (and very cold fingers) and a whole host of other weird symptoms not only in my arms, that last for over a week or even longer. Is that a reasonable thing to ask of me to do?
While studying law at university (a degree I have no intention of finishing ;) ), I had a scribe, a person who would sit there and write exactly what I dictated. It is strange, to have someone write for you. I found the experience a necessary, though less effective, manner of sitting my exams. It was so I would have the same opportunity to pass (or fail) my exams as all the other students had. It wasn't an easy option, as anyone who has dictated before would know. It certainly gave me no advantage over anyone; and on some occasions, was even detrimental. I once had a scribe who took it upon herself to scribble out notes before I had finished using them, or wrote differently to what I had dictated. If I had any other choice, believe me it would have been to do it on my own. But writing for hours, essays and structured answers; there was no other alternative.
Each time, I had to get a medical certificate for the exam; that it medically wasn't possible for me to do it any other way. Though the examining body were often unsupportive; they always did it, albeit grudgingly. There was no question of refusing, because as someone with a disability, I was protected under the Anti-Discrimination laws. They may not have been happy about making arrangements for me to sit separately; paying someone to come in and be my "hands"; but they had an obligation to allow me the same opportunities as every other student they had. To refuse would have been against the law, it would have discriminated against me and my impairment. At the time, I found it distressing, all the trouble I had to go to for them; feeling at their whims as much as I felt at the whim of the insurance body covering my claim. These days though, I look back with some nostalgia and even admiration. They may not have liked it, but they did it. They allowed me to sit my exams in the most equal manner possible.
I have been following a Dutch language school, now that I live in the Netherlands. The Netherlands is a land that believes it is all inclusive, everyone is equal. However, my experience over the last year or so only shows me that they are even further behind than Australia. I am obligated to follow this course for "intergration"; for my residency. I have been intergrated for some time now, I have always made the effort to speak the language, even when my skills were not that good. I chose to live here, in a country with a new language. I chose to live here because I believed it to be a land where diversity is celebrated, a progressive land.
Before I began lessons, when they were assessing our language skills; I told anyone who would listen that I would need help when it came time for exams. I am physically unable to sit a written exam unless it was on a computer (and even that isn't easy for me). At each step along the way, every single appointment, I made it very clear the extent of my disability and my willingness to provide medical reports and evidence of what I was saying. I had been through it all before, I knew what my rights were and what could be done. After all, we are in the 21st century, surely handwritten exams are going the way of the dinosaur in this modern age of computer literacy.
I was the best student in the class. I was already semi-intergrated and I had a wide vocabulary and participated in Dutch society. I worked hard. I got results of 100%, 90% in school exams; I knew what my difficulties were and I studied very hard independently in order to succeed. I even started a course totally in Dutch (as a dental nurse - yes, a job that uses my hands but one much more suited to my abilities than working on a computer day in, day out - I learned the hard way there!). I completed my practical training completely in Dutch. I followed Dutch news, watched and listened to Dutch programs; had Dutch friends... I don't know if I could have done more to fully intergrate. Isn't that the goal of the school?
Every time I tried to find out information about the exams, I hit brick walls. No one knew anything. I can't begin to list the people I spoke to along the way, the number of phone calls and even fronting in person. My teacher even wrote emails on my behalf, which lead no where. No one ever got back to us, no one had any ideas. The best answer I got was "after you sit your exam, then send a letter from your doctor and then you can do it again". That was not an option. No one understood, nor had any idea of what they should do for people with disabilities.
The time went by; all the unanswered questions. I wanted clarification on what medical information they needed. I went to my GP doctor, who was understanding and tried to do all he could to help me. It was only in the week or so before the exam that I gave up on finding out and just submitted a letter from my GP. I told them that I would not be sitting the writing exam until they made arrangements for me to do so. I told them I have been waiting for a year, I had informed them many times. I sat the other components of my language exams (listening, reading and speaking); leaving the writing exams until they had the arrangements made. This was back in October.
A month later, I got my results. I had passed - easily. My results were very good, as was expected by me and all the hard work I had put into it. I felt good about it, though it was marred by the fact that I wasn't able to celebrate passing all four components like I deserved. At the time, I was confident though. I felt that my results spoke for themselves, and that they would realise that I was not doing this for any other reason than because it was absolutely necessary. I didn't like how they were implying I was trying to cheat, or worm my way out of it. I always wanted this exam, I want the marks I deserve. I want the diploma, as has been my goal all along.
Sometime in December, they called me. It would seem that the letter from my GP was not enough, they wanted something from a specialist. Ok, I had that. I had a report from my specialist in Australia, an associate professor, who was one of the top pain specialists in Sydney. It also stated my tolerance for writing being an A4 sheet. I had a report form my "bilateral upper-limb assessment" which was done in 2004, which was a 10 page report, detailing what I was able and unable to do with my arms. Very clear, a lot of evidence. English is widely spoken here. All of my official papers, my birth certificate etc, were all accepted in English without a translator. So, I fully expected that my reports would be accepted, I even underlined the important sections for them to assist their "disability" in not understanding medical english.
They refused. Flat out refused. I got them what they wanted and more, and it still wasn't good enough. They refused to accept over 12 pages of medical reports from specialists and occupational therapists. In English, sure, but it's not unusual - it's not Chinese! All these documents stating what I have, a permanent impairment, that I live with severe pain, that I take medication. It wasn't good enough for them. I had jumped through hoops for them, done ten-times more than what was expected.
They were unwilling to allow me to use a computer for my exams - computers that we did all the other exams on. Next year (2013) they will be doing the writing exams on the computer, so it's not like I'm asking for something outrageous. They wouldn't budge an inch, there was no flexibility, nothing. I didn't know what to do. I felt my world was crashing down around me. I felt so ashamed to be in this position. I felt like those dreams I had of finishing my diploma and finding work in Dutch society (as opposed to the much easier expat English-speaking world) were never going to happen. Not for anything I had done wrong, but because of who I am.
I am a person who lives with an aquired disability, a chronic pain condition. I cannot physically do what they want me to do, no matter how much I wish I could. And they are making me feel like it's all my fault that I'm in this position - my fault for having something wrong with my arms.
I found an organisation for people with disabilities. Finally now, I feel I am getting somewhere. I feel I have some support, an advocate if you will. Someone who understands how unreasonable this is, and who believes they are discriminating against me. But she is hitting the same walls as I was.
What has really sent me into a dark place over the past month is the way they are treating me. I received a "certificaat", which is what they send to the people who pass in 3 components and fail the 4th. I didn't fail, but I'm being treated like someone who has not passed my exams! It is humiliating, watching all the other students I did the lessons with; able-bodied and getting their exams, while I am treated like I failed, and not allowed to have the same opportunities as them. I also received a letter telling me that they have decided to extend my deadline to complete these exams. Threatening to fine me or worse if I do not complete it in this new time period. Like I have any choice in this matter - all because they do not work by the laws of the land.
It's just awful, it really has taken me to a blacker place than the pain does. I can live with pain, I cannot live with being treated so poorly because I have a disability. I don't feel any different to the person I was before, but it seems that the world only sees that difference. Disabilities and chronic illnesses are covered under the law here, but I don't feel protected when an official (local government) body is being so blatantly discriminatory. For the first time, I feel ashamed to have what I have. All the hard work I put in, all those hours of study mean nothing when you are not given the chance to prove it. If I was able-bodied, I would have my diploma and be laughing. The only reason I do not have that diploma in my hand is because I have a disability. Or maybe foreigners don't have disabilities in their eyes... or don't have the same rights. Maybe they're just uneducated in their own laws. I really don't know - nor care - why this is happening. I just want what's right.
It's funny, they too have an anti-discrimination campaign here which I like (see here - in Dutch, but you can see the pictures) People hold photos infront of their faces, of "normal" people, what the world wants to see of them, rather than who they really were. Like a woman in hijab holding a picture of a woman showing her hair and face as she walked down the street. Or the gay couple holding pictures of a man and woman over their faces. I thought it was a great campaign, showing what discrimination is all about. Little did I realise that I would become someone who needs a picture of an able-bodied girl with acceptable arms to carry infront of me. I had no idea that I would be one of those people too. I never dreamed I would be in such a position. I thought that hard work would get me to where I wanted to go. To have the same chances as the other students I studied with.
It sucks big time. I'm sorry I've been quiet, I had written a few pieces to post here, but the battle against my pain and the shame have been winning. But in the end, they really messed with the wrong person. They won't know what hit them when this is all fixed up! I have some support now with the organisation. I don't feel so alone now and I will fight them until I get my rights back. They have no idea the sort of person I am. I studied law in the first place because I saw so many vulnerable people being trodden on. And I won't back down! I will win in the end and they are going to be hit by one of my long critical letters stating EXACTLY what they did wrong, names and dates. I will not take this quietly! They will wish they had done their jobs properly first time around. I don't tolerate ignorance or bigotry lightly.
I will win!!