Dancing with the Stars struggled with disability again. Paralympian, Kelly Cartwright, was dancing.  Kelly had part of her leg amputated when she was 15 due to cancer. Keen on sport she continued her passion. She became an elite sportsperson competing at the Paralympics and world competitions in running and the long jump. She has broken numerous world records and won medals at competitions around the globe.

The reaction of the judges to her dancing was cringe-worthy.“You gutsy thing!!!” extolled Shane the host. Every third word that came out of judge Kym Johnson’s mouth was INSPIRATION!! –  ” You are such an inspiration. It is inspirational watching you.”, she yawped. Helen Richie was only marginally better. Meanwhile Todd brought attention to everything but Kelly’s dancing by frequently expressing his fascination with her leg.  Her dancing, which was of a very high calibre, became secondary.

We disability activist and members of the Deaf community do not like to focus on the negatives and what is missing. This is part of the reason we get so frustrated at how shows like Dancing with the Stars deal with disability. We like to focus on the positives and what we contribute to society. We like to focus on attributes and the value of diversity. But even so, I can tell you that there are times when being deaf or having any sort of disability just sucks – big time. There are times that if you could just wave a wand over me and make me hearing tomorrow I would take it in a flash.

Like trying to register for a conference. Emailing and asking if interpreters or captioning are to be provided. Like waiting four months for a response. Then to be told by a clueless organiser that no interpreters or captioning will be provided because, golly gosh, there will be a hearing loop available. Of course this necessitated me having to campaign so that the organisers would provide interpreters and captioning – AGAIN!

Sure I got them to  provide. I did this by getting many of my disability activist colleagues to call them and request interpreters or captioning so that they were swamped with requests.  In the end the demand was so great that they had no choice but to provide. Sometimes, no I lie – all the time, I wish I could just register and rock up without having to go through this charade over and over again.

But sometimes my reasons for wanting to hear are more profound. Last week I caught a tram to work. As I dismounted I saw a man in the distance. He was running frantically up the middle of the tram tracks. He was waving and screaming desperately for the tram to wait for him. As the man came closer I could see that he had Down Syndrome.

The driver could clearly see the man. How could he not when he was running up the middle of the tracks in his full view? Despite seeing the man and his obvious distress the driver closed his doors and began to drive off slowly. The man was not about to give up easily. He ran straight to the front of the tram and began to bang on the window. Despite this the driver still edged the tram forward.

The man ran along the side of the tram and began to bang on the sides, screaming to be let in. Passengers at the tram stop looked on in horror at the spectacle. There were railings that created a safety barrier between the stop and the tram tracks. The man ran between the railings and the tram, thumping the side of the tram in frustration. All the while he was screaming at the top of his voice to be let in.

I ran over to the man and leaned over the railings. I grabbed him in a massive bear hug and pulled him away from the tram. The tram pulled away and went off on its journey. Not stopping nor thinking of the safety and needs of the man. I held him tight until the tram was gone and he was safe. He looked at me and screamed. His anger and frustration were palpable.  He was yelling at me and imploring to me to stop the tram but I could not.

I sat him down at the tram stop seat and held his shoulders for a moment. He was sobbing. I so wanted to be able to sit there and just talk to him and calm him down. I could not understand him. I could not lip-read him. At that moment in time I just wanted to be hearing.

I just wanted to sit there and talk to him to provide him with the comfort that he needed. Instead I just said another train would be along shortly and left. As I looked over my shoulder he was inconsolable. I felt completely useless. Sadly, not one other person sat with him or supported him.

So while I have spent a lifetime campaigning for a fairer society for people with a disability there are times that being deaf just sucks. While I have spent a life time imploring our society to be more inclusive for people with a disability, being deaf is often the crown of thorns that I wear.

I am sure it is the same for other people with a disability. The carer that does not arrive, the stairs that prevent access, the toilets used as store rooms, the lack of verbal announcements at train stations, Craptiview and attitudes – All of these things give people with a disability just cause just to sometimes just wish their disability away.

Some days …..

I attended a brilliant youth conference today. At the conference a young man, a refugee from Sudan, spoke about his journey to Australia from war torn Sudan. He counts his blessings everyday that he lives in Australia. He is grateful to wake up everyday and be safe. He is thankful that he and his family can walk the streets and not have to constantly look over their shoulder in fear. Poignantly he described how he is amazed that for breakfast every morning that he can, ” …choose to have black tea, Earl Grey tea, Breakfast tea or Liptons tea or lots of other teas. In Sudan I would probably have used yesterdays tea leaves.” He is now educated, employed and in his view lacking for nothing. He implored the audience to embrace and be thankful for the country that they are fortunate enough to live in.

The speaker that followed him could not have been more contrasting. She was an academic and a staunch advocate for the youth of Australia. She lambasted Australia for its poor Human Rights record.  She pointed out how Australia flagrantly breached its obligations under the numerous United Nations Conventions that they had signed. From youth, boat people, Aboriginal Torres Strait Islander people, same sex marriage, education to disability she pointed out Australia’s appalling Human Rights record. “For God sake..”,  she thundered, “Tony Abbott has even written to the UN to ask for permission to keep the children of asylum seekers in detention.” 

Not surprisingly the contrast between the perspectives of the two speakers left many in the audience in shock. Here we had a young Sudanese man, fortunate enough to be living in Australia, who thought that Australia was best country in the world and was forever grateful for the safe haven and opportunities that Australia had provided him. On the other hand we had a well paid academic, who in all likelihood had received her education entirely free under the Whitlam Government, slagging off the country left right and centre and imploring us to hold the country to account. She made it clear that Australia should be ashamed of what it has become.

It left me wondering whether we should be counting our blessings. Judging by the newsfeed on my Facebook there are not too many Australians currently counting their blessings. CHINESE WORKERS TAKING AUSTRALIAN JOBS – SENATE TO EXAMINE SUPER GENDER GAP – DISABILITY BACKLASH OVER NDIS DELAY -SAVE PAID PARENTAL LEAVE – GOVT ANTI GREEN LAW ERODES RULE OF LAW…  It goes on and on. It just seems that everyone has something negative to say about Australia. A far cry from a young Sudanese man who is just thankful he is living here without fear and with so many choices of tea to choose from.

So should we count our blessings? Certainly there are times when we need to take stock and celebrate how lucky we are. To focus on the negatives all the time would be entirely depressing. But what we should never do is count our blessings. And here is why.

As late as the last century Britain still had what were called workhouses. These institutions had been around for centuries. Their purpose was initially well founded. They were established to look after the poor and the infirm. People who were poor and infirm  entered workhouses and part of the conditions of their stay was that they worked. (Perhaps an earlier version of Work for the Dole.)

Over the centuries workhouse conditions became appalling. It was the ultimate degradation to have to enter one. “Men, women, children, the infirm, and the able-bodied were housed separately and given very basic and monotonous food such as watery porridge called gruel, or bread and cheese. All inmates had to wear the rough workhouse uniform and sleep in communal dormitories. Supervised baths were given once a week. The able-bodied were given hard work such as stone-breaking or picking apart old ropes called oakum. The elderly and infirm sat around in the day-rooms or sick-wards with little opportunity for visitors. Parents were only allowed limited contact with their children — perhaps for an hour or so a week on Sunday afternoon” (http://www.workhouses.org.uk/intro/)

Make no mistake the conditions of workhouses were appalling. Many people died within them and were buried in unmarked graves in the grounds of these institutions. These barbaric places were seen as the norm to deal with the poor and the infirm. There were laws passed to ensure that they existed. Overtime people began to protest about conditions of workhouses, particularly how they treated the sick and the infirm. None other than Florence Nightingale campaigned strongly about the conditions of workhouses in Britain. Through her efforts, and other like minded campaigners, professional health care was introduced into workhouses. Before that health care had been provided to inmates by, “ ‘pauper nurses’, or women inmates who were not themselves sick, notorious for stealing their patients’ food and gin ….”. (http://www.historytoday.com/lynn-mcdonald/florence-nightingale-social-reformer#sthash.KUBKAKU7.dpuf )

Through Nightingale’s efforts to reform health care in workhouses it is said that the seeds for Universal Health Care were laid. This eventually led to the establishment of the National Health Service (NHS) in Britain in 1948. This was one of the first such systems that provided free health care. The NHS probably influenced the establishment of programs like Australia’s Medicare system. More importantly Nightingale’s exposure of the inhumane conditions of workhouses helped to bring attention to the conditions of workhouses and their eventual demise.

The point of this story is that the wonderful life that Australia and similar countries throughout the world lead came about through the hard work of social reformers like Nightingale. People like her took on the system and changed it for the better. Years ago in Australia people in wheelchairs could not get on buses. Until very recently in Australia there were no Auslan interpreters to allow people who are Deaf to participate in employment and education. Did you know as recently as 1945 only 23% of people at university were women? It is now 55%. All of this came about because people fought for change. There is still much that needs to be done.

Australia is what it is today because people fought for equal rights, equal opportunity and freedoms. It would be so easy for us to rest on our laurels and say, “We have it good, stop complaining.”  No matter how good our life is here in Australia we need to remember it got that way because people fought the good fight to make it that way. The minute we get complacent all of those hard gotten gains can be lost. Indeed in recent times, particularly under the current Abbott Government, many of these gains have been lost. The NDIS is currently under threat, god help people with a disability if we do not fight hard for that one! We must constantly remain vigilant.

While we must celebrate the wonderful life that we have here in Australia, we must never forget how that life came to being. Complacency will be our undoing – That’s why the academic today was so scathing of Australia’s most recent Human Rights record. She knows how hard our forefathers fought to get the lifestyle that Australian’s all value today. It’s not because she thinks Australia is bad, rather it is the opposite. She wants to keep it that way. May she, and many of her ilk, keep up the good fight so that young Sudanese refugees can learn what it is like to have a choice of tea for breakfast in the morning. Such a simple thing is worth fighting for, more than most of us will ever know.

Nothing wilts faster than laurels that have been rested upon.