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An SMS I sent yesterday
“After waiting for 17 years for accessibility I’m waiting to board my first train to NEWTOWN train station”.
Yes after what seems a long slow build and a lot of behind the scenes work the station is operational.
I was quite emotional. I tried to engage the station staff at central station in the joy which wasn’t that apparent, but to no avail.
I weeped and giggled from central. I sheepishly explained to the sole occupant of the level bit of the carriage that I had waited a long time. She said they had done a good job. I noticed that very soon she will be pushing a pram and using the very lifts that I am lording.
I have done two single trips arriving at Newtown station. I have shared the lift with 3 mums with prams, 2 small children, one young man who is on crutches for 10 weeks and an older gentleman with walking sticks.
I just caught up with “the voice” Australia the whole series so far including Rachael Leahcar and her amazing voice. As a woman living with disability myself I love her approach to the whole thing of being seen as a singer who happens to be blind as opposed to a blind singer. I love that in her and I understand why the show had to cover it, I just hope it doesn’t become a repeat of the Gerrad Gossins thing of a few years ago when Dancing with the Stars felt the need to raise his vision impairment every week.
So I was sitting at an inner city bus stop waiting for a bus. I was dressed well enough. In other words this time I was wearing shoes not uggboots — yes been guilty of that too. I was in slacks, jumper and trench. I’d even applied makeup. On my lap was my Oroton with much too much evidence that I’m addicted to stationary shops. I was reading my latest purchase; The Hitchhiker’s Guide to the Galaxy. Others were around. Standard day really. A woman (50 ish, nice face, unremarkable) walked past. I noticed her legs over the edge of my book. She then doubled back without going very far.
Before I knew it she had thrust a rolled up $10 in my left hand. I looked up and I think the first word out of my mouth was “What?” Not all that polite I get that. But I was embarrassed and nervous about how I must look to elicit such generosity.
I looked up at the kind stranger — putting on my most “I’ve got it together” face and smiled. I was ready for pity. I was ready to go in to education mode and reassure her that I am a woman of means despite the cracks in the upholstery of my rented chair. But I saw none of that. If anything I just saw respect, or genuine good will.
Ok. But $10?
” I’m really fine, promise. Thank you, I don’t need this”.
“I know that” she was not alarmed that I had made the protest, nor was she swayed by my lack of need. She didn’t seem to be donating as much as gifting.
“go buy yourself a chocolate”. This was a gift of indulgence. Of acknowledgement not pity or need.
At that point I smiled. Was my weakness for thinking and coping with an intensely difficult month by sitting with a dark hot chocolate all over my face! The wiring in the chair would not have given me the option in that late afternoon. But still I prepared to try again to refuse.
But she was gone. The blue note looked up at me now in the top of the bag just inside enough to keep it safe. I wasn’t ready to put it in securely with my other notes. It wasn’t mine.
Later when the Disability Discrimination Legal Centre called for membership dues of $10 my blue note was the first on the table. Not chocolate maybe but a good way to go.
This guy is really funny, and smart. I know. I watched one or two of the episodes of the Oprah Winfrey “reality show” he was on. He clearly has an interest in a broader range of issues than his own Cerebral Palsy. Although quite open it seems to owning up to it — like me it might be a bit hard to miss.
I know it looks like I’m just jumping late as ever on to this bandwagon. But I was interested in this piece about him. He and I had families with similar approaches to schooling and such it seems.
A native of Buffalo, Mr. Anner said his parents insisted he attend regular schools and be treated just like other children. “My family is weird in a very good way because I was always exposed to the arts,” he said. (His mother teaches acting and playwriting at the University at Buffalo; his father is a bartender and videographer, with a passion for travel.) “Everything was always about finding creative energy and finding different ways to do things.”
I know and understand that he doesn’t want to be famous because he uses his chair, nor does it appear that it will be the focus of the show and that’s great. I know the feeling. I was the girl who declared as a teen that I would never work in disability (so much for that).
Regardless of his wishes, he will I’m afraid have the CP label added to his unspoken CV. It is part of the appeal. We can’t get past that. What is so good to see though is that he is himself broader than that. So he will take those who see him and know him broader than that too.
Having separate Commissioners for each portfolio, at the Australian Human Rights Commission seems much more logical. It also looks like the Commission is getting some fresh resources and that is always good. The issues and debates covered by each arm of the Commission and the groups they talk to, with and advocate for are similar but diverse and need a full time specialist with the time and resources to move the agenda forward. In my mind though it doesn’t follow that the advocate must always be one of that community.
I’m not surprised that Commissioner Innes is taking on the full time role for disability. I like him a lot and he is great in the role. Articulate and observant, with an ability to get those who don’t have a direct experience to “get it”. He also commands enough respect among those of us who do have the experience to be a leader among us. Not an easy job.
I follow him on various social media platforms and my eye is drawn to his updates regardless of whether they are on race or disability. I have heard him speak on race issues too. I have read his words. I get “it” too now at least a lot more than I did. Part of the power in his arguing for racial tolerance is the fact that while he clearly understands marginalisation, he is white. Yet he is passionate. There was value for me in that I found myself listening more closely I think because it changed the way I valued the argument.
I understand the whole argument of nothing about us, without us. I know the value of direct representation. We need to be at the table, front centre and visible. All the time. We must be there.
All I’m saying; there is power when someone outside the obvious circle makes our arguments powerfully too. We value add. Different voices, especially perhaps unexpected voices, bring a different power and different people to the table to listen and learn.
Despite the mood then I admitted to doing my earlier post, the Human Rights Lunch and Awards ceremony was not only a highlight for the Human Rights Commission’s year but mine as well.
It was an interesting mix of people from all community and social spheres in Australia, ranging from what I could see, the full gamut from refugee soccer players who had been the subject of a winning documentary to politicians and journalists.
The situation that indigenous Australians have found themselves in this year, especially since the Northern Territory intervention imposed by the federal government was present and was a recurring theme. Refugee issues were also prominent in award recipients, while Catherine Branson QC spoke on bullying and violence and harassment and the tendency of the rest of us to be innocent bystanders and ignore these kinds of human rights violations.
My highlight came when Therese Rein, the wife of the former PM was awarded the Human Rights Medal. In announcing the winner Ms Branson talked about a whole range of Ms Rein’s well-informed and lifelong community service activities; such as her work with homelessness issues, youth issues women’s issues and several others. In her acceptance speech she could have spoken with eloquence on any of these topics. Instead she talked quite personally and very profoundly about the real challenges faced by people with disability. Unfortunately she was unable to attend in person, but regardless my cynicism about whether people actually get what it is like to participate in daily life with a disability softened to tears. I think she gets it, in a way that I’ve not heard politicians or community members, or indeed even some family members get it.
I’m touched by the fact that she acknowledges and expects participation. I’m touched by the fact that she engages with the family members in a real and direct manner. I’m touched that of all the issues she could have covered with a captive audience of 3 1/2 thousand people or so this was the topic of choice to a sympathetic audience of folks that can remember it.
I’m noticing that she talked about marginalisation in a way that has rarely been done effectively except in relation to race matters.
In light of this post from FWD– feminists with disabilities, I thought it would be good to update everybody on my continuing experience with Dragon Dictate for Mac, which I have been using sporadically since my birthday.
By and large it’s great. I certainly use it for most of my blog posts, which is why they can be quite a bit longer. I also use the software for e-mail although that is still a bit harder than I’d like it to be, mostly user error I’m sure.
My biggest issue is knowing the terminology that it expects. It’s certainly a lot less random in its “actions” then earlier versions were and I think it’s still learning how I speak. But, when I’m on a roll it’s good. It is still very tempting to use my hands to move the cursor which I know is bad. When I do that the program starts to act out and add random letters to the end of my dictation. Also, my voice is fairly inconsistent and I need to be self-aware enough to know when it’s a good dictation day and when it isn’t.
It’s a long slow curve but it is worth the investment already.
Still inconclusive. for my mind, the thing we need to focus on is how to live with a variety of impairments and limitations because as we age these problems and society’s preference to keep active and independent is not going to change despite increasing impairment levels. Partly because the vast majority of people with disabilities acquire the disability, and then seeing people with disabilities before them getting on with it.
When the “quick conceivers” were compared with those taking over a year, there was no significant difference in the rate of cerebral palsy.
However, a group of babies born after IVF or ICSI, in which sperm is directly injected into the egg, had approximately double the risk of cerebral palsy compared with those conceiving quickly.
Feminist organizations have become more aware of the need to make their activities accessible to women who use wheelchairs, women who need written material in alternative formats, and women who need Sign Language translation, but much feminist practice still assumes a consistently energetic, high-functioning body and mind, and certainly not a body and mind that are impaired by illness.
I have an interesting mix of physical and energy based disabilities and I have to agree.