Propeller

On our way to visit Mike, Marissa and the kids on Thursday one of my faithful readers sent me information about an integrated dance company called Propeller and told me that there would be classes on Saturday morning for kids Ruby's age. I got into the hotel and looked up their webpage, and if you clicked the link above, you will have seen that it's an impressive page. The classes looked like fun and we spoke to Mike and Marissa and they agreed that we could take Ruby Saturday morning if she wanted to go. She, upon hearing about it, was immediately up for it. She told us, in an amazing act of assertion, that she might feel shy around the older kids and, though she wanted to go, she didn't know if she wanted to participate. We struck a bargain. She participated only if she wanted, we would not encourage or prompt or otherwise try to talk her into it. We all shook on the agreement.

Saturday morning came and it started out with Ruby sitting in the back of the car very quietly. She's a talker and silence isn't the norm with her. We talked and once again we quelled her nerves by assuring her about our behaviour - not about the event itself. She would not be forced to do anything. It was all her call. I know that sometimes kids need encouragement but, too, kids need the opportunity to practice decision making. This seemed to be that time. She perked up and by the time we arrived she was eager to go in. The parking lot was round the side and as we made our way there several buses arrived depositing wheelchair users showing up for the class. I got out and the sidewalk seemed impassible. My weight plus my narrow tires plus the snow and ice made it almost impossible. Joe made it really clear that we were going to make it. Sometimes, I do what I do because and only because Joe makes it happen. I sometimes give up more easily than he does.

We were the first to arrive and by the time I got in my gloves were soaked, my hands were cold, and I was already worried about getting back to the car. But, people were arriving and the gym was filling with energy. Ruby was shy but, without prompting, joined in the circle with the other kids. And, my, what a diverse lot of cool kids. Ruby paid no mind, and my heart swelled with pride here, to the various kinds of differences in the room She was not taken aback by any of the wheelchair users or any of the kids with intellectual disabilities, or indeed any of the more typical kids either. She took it in stride. We could see her natural reticence with others and a bit of shyness peeking out, but, nonetheless she stayed.

Jessie, one of the teaching assistants, who had introduced herself to us and to Ruby when we arrived noticed during one of the beginning exercises, that Ruby was feeling a bit out of place. She didn't know these kids, any of them, and she was, amongst difference, the odd person out. Jessie took a bit of extra time and gave some special attention to Ruby nudging her along and bringing her into both movement and the group itself. That Jessie was a teacher with Down Syndrome didn't seem to register with Ruby, Jessie was just a teacher taking time with her. As Ruby relaxed into the group, Jessie's attentions went elsewhere. She gave just enough and stopping long before too much. By the end Ruby was smiling and participating and doing all the various activities. Along with Jessie the other teachers and other kids did a marvelous job of keeping everyone involved and everyone included. They made inclusion seem natural. Most of all, they demonstrated that inclusion was entirely possible.

Just before the end I had to go to the washroom so we slipped out and found it. Joe went back into the gym and I waited out with the other parents. Here's a shock, all dads! One of the fathers told me about how much his son with an intellectual disability looks forward to the classes and how much the experience has meant to him, his son and his family. We swapped 'proud of kids' stories, it was nice. Ruby came out and announced to me that she had just been a piece of cheese pizza! I looked perplexed and she just smiled. Joe explained to me later about how the class ended with all the kids laying down in a big circle and being cut into slices of pizza, when they were 'cut' from the group they got up and left. Ruby chose, as a vegetarian, to be a piece of cheese pizza.

Of all the things about the class that she could have told her parents. The differences of the other kids, the friendly support of the teachers and the encouragement of Jessie, that's what she chose to tell. 'Mom, Dad, I was a piece of cheese pizza!' Then she asked if she could join the class and go every Saturday. She'd have fun. So, Monday, she'll be registered.

I've already thanked Jessie, though she was busy so I had to leave a message for her, for taking the time with Ruby and I also asked her permission to write about her here on my blog. She wrote me an email telling me that it was OK.

That's right, Ruby's teacher, who took time with her, wrote me an email. Suddenly it makes the fact that she has Down Syndrome both more important and less important. I don't think I have to explain that statement. But for Ruby, Jessie is just that nice woman who gave her a high five exactly when she needed it. And that, on a cold day, was very cool to see.

DNA

Joe's father, Joe, was a lovely man. Full of the love of life and with a generosity of spirit that was so natural to him that it had to be coded into his DNA. He had a harmonica, and could play. He loved to both tell a joke and hear a joke. He worked hard. He played hard. And, maybe most important of all, he loved his family. He was terrific around children and seemed to have a natural ability to know just what to do to make them laugh, just what to do to make them feel loved. A remarkable man.

Whenever he came to visit us, either in University when we were students, or to Toronto when we were first starting out, he'd look in our fridge and then go out and buy groceries for us. We didn't need him to do that, well maybe we did sometimes, but he did it because he wanted to, it made him happy. He liked to give in practical ways, love in concrete ways. I still remember him fondly. More than that, I remember him often. Probably because Joe is very much his son. Joe not only looks like his dad but he carries himself in a similar manner. Both easily moved to laughter. Both easily moved to generosity.

I think the thing that I learned from him that I value the most is the fact that it's possible to live a life in which you are remembered well and fondly. It's possible to set an example for how to simply 'be' in the world which will indelibly leave a mark on the heart of those you've touched. It's possible to be, in a way, immortal. I want this.

We don't actively think, when we are with the kids, about these things. Living in the past and living for the future are both dangerous things. Being in the present affects the past, because it becomes the past. Being in the the present affects the future because, in the present, direction is set. So, we try to be in the present as much as possible. This is particularly true when we are with Ruby and Sadie. It's so cool to simple be part of their life now - we get to become part of their past and be in on the development of the future. And we do this only, simply, by being with them.

Sadie, when she came out of day care and saw us in our car, pointed at us grinning saying 'Dough!' She doesn't watch the news so isn't familiar with Bennifer and Brangelinda and our penchant for combining names, she just naturally came up with 'Dough' as a combination of Dave and Joe. Her grin told us that she remembered the fun we've had in the past and that she anticipated more of the same. How nice. We went to one of those playland kind of places here in Ottawa and before even heading over to the games and the flashing lights she was up and into our arms for a huge Sadie hug.

On our way out of the grocery store, I stopped to buy some lottery tickets. Everyone needs a retirement plan after all. I got Ruby to pick the tickets. She had stayed back with me in the store while everyone else had gone to get the cars, it was cold and snowy. When the woman gave me the tickets she said, 'I hope you are lucky!' Ruby nodded, agreeing. I said to Ruby, 'But I'm already lucky, I get to know a girl named Ruby.' I thought the lottery ticket woman was going to melt when she saw Ruby get tears in her eyes. On the way out she put her hand on my arm and said, 'Is it OK if I remember you said that for a long time?'

I told her that if that was the only thing she remembered about me when she was all grown up, I'd be happy. Then the cars arrived and there was a swirl of activity. Ruby always rides with us when we are all together, Sadie still wants to be with Mom and Dad. Joe was loading the wheelchair into the trunk when Ruby piped up, she'd been thinking. 'I think I'll remember the wheelchair too, it's fun.'

Then we were all off to make the past and build the future. Just like Joe's Dad Joe did for us.

Superfast

When Ruby found out we were going to see her in the morning she asked, 'Do we have to come to Toronto?' I told her, that we were coming to Ottawa. She asked if we were staying at their house, an odd question because we never do. I said we were going to be in a hotel. She's been in a lot of hotels with us so I reminded her, 'It's the hotel with the long hallway where you get to run superfast.' She knew immediately which hotel it was and got excited.

After all she likes to run superfast and she knows the hotel has a pool. So she asked, 'Wanna see me run superfast right now??' I asked her how I could see her because I was on the phone. She thought for a minute and said, 'You don't have to SEE me.'

Huh?

'I'll put the phone down hard so you can hear it, I'll run over there, and then I'll run back and pick up the phone and say, hi. And, AND, I'll run superfast both over there and back here.'

Without waiting, she dropped the phone, I heard running steps off into the distance and then all the way back, she picked up the phone and said, breathlessly, 'Hi, Dave.'

'Wow, that was really superfast,' I said, not knowing where she ran to and from but knowing that it must have been superfast any ways.

I struggled to stay on the phone for a few more minutes because I so wanted to get off the phone to tell Joe. So after we said goodbye, I told Joe about the superfast race.

We both agreed that's she's becoming the master of adaptability and accessibility, 'can't see me, who cares? We'll do it a different way!'

For the longest time I thought that Ruby with her penchant for spirituality and lovely discussions about God and his Kid was headed for the ministry.

Now, I'm hoping she's headed for a Ministry in the House of Commons. By gum, with her at the helm, adaptation and creativity will be the norm and accessibility will be the law.

Solutions (Two)

We made the decision quickly. Without even much of a second thought. What with the International Day of Mourning and Memory, and all the posts regarding that day, there has been so much emotion expended. Along with that, I've been doing a literature search on people with intellectual disabilities as witnesses in the justice system. This is in preparation for doing an article demonstrating that Self Esteem, Sex Education and Abuse Prevention classes taught to people with disabilities give them the words with which to tell what has happened to them and the self esteem needed to fuel courage in making and allegation and in testifying. We've got strong data to show that this works.

But, my oh my, the research is a bit bleak. It was shortly after reading a study that showed that if you give a written account of testimony to one group, telling them that the witness had an intellectual disability and exactly the same written account to another group telling them that the witness had typical cognition (I don't remember the words they used) the group who had been told that the witness had a disability rated the witness as non-credible and the group who had read the same testimony believing it was a typical witness saw the testimony as credible. Incredible? Incredible. Anyway, much of the research is about that kind of thing. But that was the one that pushed me over the edge.

Yesterday, for my sake, and for the sake of you as readers, I wanted to lighten up a little bit here on Rolling Around in My Head. It's good to look at life straight on , but it's also good to see good. But that study had me sit back in my chair at my desk at work, pick up the phone and call Joe to say, 'I need to go see Ruby and Sadie. I need a hug from the kids.' Joe agreed instantaneously, and it was all set up. We go tomorrow night. I'm more delighted than you can imagine.

I have a tendency towards both depression and anxiety. Not a debilitating tendency but those twin demons can rob me of the ability to experience joy. Given that I work, so often, in the area of abuse  - even though it's abuse prevention, life can get dark for me. Given too, that working on this paper has had me reading articles that are basically about how people with intellectual disabilities can be shut out of the justice system, not because of the disability they were born with but because of inability thrust upon them by forced ignorance and denied information. Imagine that a police office, already predisposed to see those with intellectual disabilities as incompetent, interviewing a woman who talks about how a man put his 'thingy' in her 'woo woo'. He will assume that that language is due to disability. He will not know that her disability was the cause for others to deny her the education from which she could have developed vocabulary. We've demonstrated that 'thingy' becomes 'penis' and 'woo woo' become 'vulva' in ONE TWO HOUR CLASS. We've demonstrated that passivity becomes assertion in ... Oops, I'm ranting.

Anyways, I'm halfway through the journal article now, I've got the data all done, I've got the literature review finished, I've got the introduction written. And through all that, I've managed to get myself right, royally, rueful. So, I'm going to get a Ruby Hug and a Sadie Hug and probably a Mike and Marissa Hug too. We'll spend the day with kids in a noisy kid place and then a day in a museum and then we'll come home. Monday I'll finish. I'll have pushed off all the darkness and be ready to write about solutions not problems ... which is the frame of mind I need to be in to write the next part of what needs to be written. The ... OK that's the problem ... ta, da, here's a solution. I shouldn't be doing this, I don't have time to do this, but I have to do this ... does that make sense?

So tomorrow it's video-conference ... hi to you folks up in the North, if anyone reads this let me know during the question section ... and then it's off to Ottawa. I hope to have a Ruby and Sadie stories on the blog on Saturday and Sunday. 

FYI

There has been a bit of controversy going on over at 'The Canadian Weblog Awards' and you might want to pop over there to see what's going on. For those of you who might be confused. In Canada we have two very different blog awards. The Canadian Blog Awards, where you went to vote for me and where I won Best Personal Blog (thank you) is one where readers vote. 'The Canadian Weblog Awards' are a juried award system where readers votes aren't part of the process. Janet, who might be the Janet who comments here sometimes, raised the point that all the bloggers who write about physical and cognitive disabilities have been shut out in the short list and thus will not win an award. The two categories being discussed are 'Ecology and Social Justice' and 'Health and Wellness'.

She suggests that there is bias amongst the judges in that no disabled blogger made the cut. Schmutzie, the organizer, has brought Janet's post forward to discuss and this has resulted in interesting comments and discussion. If you go there, scroll down the suggested list of new blog categories to the discussion of Janet's comment and then go back up to the one that's on top currently. There you will find that Schmutzie has asked for an appropriate name for the new disability category. Help her out if you can.

I commented as a blogger who did not make the short list in either category - but not so much about that as about the 'health and wellness' category as an inappropriate place for the 'disability' bloggers to be placed. Anyways, I'd like to hear your point of view. Is Janet right? Do you think there was bias in the judging. It's hard for me to give an opinion because I'm not sure how I could separte not making the cut from my opinion. I think I could give a fair opinion but no matter what I do I'll be seen as being either 'gracious' or 'bitter' ... so, I'm going to leave the opinion stating to those of you interested enough in these sorts of things.

Today's post follow ...

Right Now

Right now I'm eating left over pizza. Double sauce, double cheeze, double hot peppers and pineapple - it's good even cold. I love cold pizza.

Right now I'm flipping through an Italian translation of one of my books, it came out a while ago but I just recieved a copy of it now. I can't read a single word in it but it's very, very cool.

Right now I'm writing an email to a person with whom I had a fight several years ago and with whom bonds have been reestablished. It's a funny, silly email, the kind that you send to people just for fun.

Right now I'm listening to a message on the phone from Ruby. Haven't seen her for awhile so I decided to play it back and giggle when she giggles trying to tell a joke.

Right now I'm listening to the kettle come to boil for a cup of tea. I haven't had a cup for several hours and I'm at the point of desperately needing one.

Right now I'm planning what to have for supper. We both feel like comfort food, not pizza comfort, home cooked comfort so we've just decided on one of our favourites.

Right now I'm thinking about this year's vacation. We've all decided to go somewhere new this year and I'm about to Mapquest the drive to Moncton.

Right now I'm extremely pleased to have a Canadian Blog Award for Best Personal Blog in 2011 on my Blog. I shouldn't have lusted for it, but I did and I'm happy to have readers that bothered to vote!

Right now I'm sitting in my housecoat in my wheelchair at the computer writing my blog. It's a simple blog, purposely so, after all the heavy posts from the last few weeks, it feels right to feel alright.

Right now I'm thinking that a nap might be good. I think I might just let darkness settle snug around us while I'm snuggly snoring in my bed.

Right now is right now and I intend to live now right.

A Public Letter

To: Still in Hiding:

I do not know if what I'm about to do will be upsetting to you. I want to highlight your comment regarding the 'She Never Knew She Never Knew' video by making it part of a blog post. I usually don't do this without permission, however, I have no way to reach you. I finally decided that your comment was bravely made in a public space, therefore, it was intended to be read. I hope, I really hope, that doing this is OK with you.

To Blog Readers:

For those who did not read the comment, I am reproducing it here, completely without edits:

I was angry at you when I saw that video for the first time. I didn't like to be made to feel feelings that I've stuffed away. I did not live in an institution, I lived with something equally damaging. I lived with being my mother's tragedy and my father's disappointment. They didn't want a child on wheels. They never took me out, admitted to only a few of my existance. I was home schooled, the call it now, but the experiece was rather like getting education in a prison cell. If I left the house, it was after dark, and we'd drive long distances to be in placed where we'd meet no one we knew. I never knew about girlfriends, and gossiping, and dances, and playing with others. The difference between Arlene and myself? I knew I never knew. And it's left it's mark. I can't go out without a sense of shame. People's stares hurt me to the core, more than they should, because I know that my parents fled from them. Mr. Hingsberger, I happened upon your blog while looking for something else. I've stayed ever since. I've never commented. But I want you to know that you have introduced me to a world of pride and self respect as a person with a disability. I don't know why you write this blog, I can sometimes feel the cost behind the words. But I want you to know that for me, here in the rest of the life I have, you have made a difference. Thank you. On the 23rd, I will hold a small funeral for my childhood. Then, I hope, I can say goodbye to all that and begin to work on beginning. I shall play this song as my prayer for the childhood, for the life, I lost. Thank you Dana and Miles. Thank you for telling the story of many of us.

To: Still in Hiding:

 I thought of you all day yesterday. The image of someone having a funeral for their childhood registers in my mind and heart as a tremendous act of courage. Saying 'goodbye' and 'farewell' to one's past is one thing, but to say 'rest in peace' to memories is quite another. I have tried, many times, to bid adieu to hurtful moments, but they never listened. I had said 'Goodbye' but they had not listened. They trotted along behind me, weighing me down at some moments, catching me off guard at others. It wasn't until I did, as you have now done, allowed them to rest, to have their own peace that I began to feel free of them. I had to mourn their place in my life, I had to grieve the loss of the anger with which I had held them so tight, an anger that consumed me. The hurt was gone, but my limbs had grown weary from having carried them so far along the way. I hadn't thought of this process as a 'funeral' but I'm guessing that's exactly what it was. So, though you don't know me. I was there with you, several times yesterday, in spirit. I believe that many readers here, I have generous hearted readers, were with you too.

What I wanted to say to you, however, was that life is not to be lived in hiding. I know I am presumptuous to say this to you. And I may well be wrong. But, I feel this deep need to say what I have to say. Many, many writers in the disability community have written that the gay community and the disabled community are twin communities. That we are born into families much different than ourselves. Some of us are born in to families who accept our difference with love, others, deep in their hearts, would wish us different if they could. So, even nestled into our mother's arm's, even sitting on our father's laps, we are different. Part of the process of growing into pride, which is every bit as important as growing into adulthood (and adulthood may not be truly possible without it) is the 'coming out' process. Not 'coming out' to the world. No, that comes later, much later. We begin by coming out to ourselves. We begin by accepting who we are and what we are and how we are. We begin by rejecting the definitions that others put on our lives and begin for forge our own. We begin by acknowledging our difference in the face of prejudice, our difference in the face of bigotry, our difference in the face of bias. We lose the language of self delusion, we no longer say, 'I don't consider myself to have a disability.' or 'I only focus on my abilities' or 'I am just like everyone else'.  Instead we begin to speak to ourselves of ourselves as people with disabilities - as members of a community, as part of a movement, as having a place to belong and a perspective to offer. We began seeing who we are as entwined with what we are and how we are and even begin to see then ... the biggest miracle ... why we are.

You signed off your comment on the blog with 'Still In Hiding' but, oh no, you aren't. By writing that comment, by peeking into a disability blog and by staying and by reading, the door was being slowly swung open. You have smelled fresh air ... welcome. I am honoured that you have come here to Rolling Around in My Head. I'd recommend, again presumptuous, for you to read fellow comment makers and follow links back to their own blogs. You will find here readers who are parents, who proudly love their kids. You will find here care providers, who proudly serve and wish to serve well. But, most importantly for you, you will find others with disabilities here. All of whom have made a journey. All of whom have decided to be publicly, and sometimes even wonderfully outrageously, proud.

I would love to hear from you again, sometime, even on my personal email, which you will find over there under the picture of Joe and I, or here amongst this tiny, little, loving community.

I Will Never Forget: Guest Post for the International Day of Mourning and Memory

I received an email from a woman I met many years ago when we were both much, much, younger. She wrote this and sent it to me, kind of a personal reflection on the International Day of Mourning and Memory. I felt that it was too powerful and too important a story for my eyes only. I asked her for her permission to put it up here on my blog and she has graciously allowed me to do so. I am very, very, touched by how people have taken this day so seriously and spent time thinking, remembering and reflecting. 

I Will Never Forget

Susan Ludwig-Goharriz

It was almost my first job after graduating from University as a nurse.  There had been an aggressive campaign to recruit new graduates to the State School.  The School was like a small community – at one time housing thousands of individuals with developmental disability in a cluster of “cottages.”  In the same community was a hospital – used to care for the most medically fragile of those individuals as well as any individual from the cottages who became ill.  I would be a staff nurse in this hospital.

The school was supposed to be “progressive” in its care model.  It was an attempt to offer “institutional” care in the most “home like” surroundings.  The hospital was supposed to be a place where care providers were experts in caring for the various specific needs of the community members.

The reality was starkly different from the model that was touted to the country that was still embracing the Kennedy administration’s attempts to give better care to the disabled.  It was a country that was still reeling in shock at the ending of that presidential life . . . but still trusting in the capacity of institutions to make decisions about those who were deemed unable to make their own decisions.

Our new patient was admitted from one of the cottages with a serious ear infection.  Green drainage ran down his neck – so contagious that he had two infected fingers where he had scratched at the itching drainage and the hang-nails on his fingers became angry red and swollen.  He was among strangers in the hospital – and the staff genuinely tried to do what they could to support him in his new environment.

The doctors on the floor were not competent to practice in the community.  They had not passed their State Board exams and so their practice was restricted to institutions.  My strongest recollection of them was when they reported me to my head nurse because I had refused to stand when they entered the nursing station.  Their arrogance was only surpassed by their ignorance.

The plan of care for my new patient?  Well, there was virtually no plan of care.  They prescribed topical antibiotics for the sores on his fingers – and oral antibiotics for the ear infection.  There were no lab tests ordered to be sure that the antibiotics they ordered were appropriate to the infection – just give the oral medications and don’t question our judgment.  The infection showed no sign of abating even after several days on the prescribed regimen.

One afternoon, I arrived for my shift.  This young man was having seizures.  He wasn’t having just one seizure – but one followed by another.  The seizure activity was such that it was driving his temperature up by the hour.  Our head nurse (experienced and kindly but not willing to challenge the medical system) was trying everything she could to control his fever, but the seizures continued – one after the other for the entire shift. 

He appeared to be beyond understanding what was happening to him.  During the few moments between seizures he seemed to be dazed.  I knew he was in pain – but no medication was allowed to relieve his pain.  The fingers continued to be angry red – his ear continued to discharge its steady stream of infection.  The doctors refused to discuss any alternative treatment – there were no IV’s to replenish his fluids or electrolytes.  There was no attempt to sedate him in the hopes that his seizures would diminish.  At the time, it was suggested that administering general anaesthesia would make the seizures pause for a long enough time to bring his fever down.  The physicians smugly declined to offer any treatment that would have helped this young man.

The next day I arrived for my shift and this patient’s bed was empty.  He had lived almost 36 hours with one seizure after another.  Finally, his fever was so high that his vital organs shut down.  One of the doctors visited the floor later that evening – and with a certain amount of smugness advised me that they had immediately contacted the family of this man and requested permission to have his body cremated.  The family had given permission and the doctors had hastened to follow the family’s wishes thereby sidestepping an autopsy.

My mind goes back to him often.  I see him as the head nurse was desperately trying to bring his temperature down – and how everything we tried had failed.  I was filled with the rage that comes from feeling totally helpless in the face of a system that forgets.  It forgets the value of the individual and his quality of life.

Day of Mourning and Memory: YouTube Update

This was just sent to me, done by a student named Kristine Snider Thank you so much Kristine, I loved it! For those who don't know some People First groups in Canada use a yellow and black ribbon as a symbol of remembrance - this is what's referred to in the video.

Hello again, I am feeling very scattered because of other duties and expectations right now. I'd like, however, to have a resource of all blogs published today about this day. I've read one written by Andrea which has a tremendous amount of information and Amanda's comment on one of the posts here which she has compiled into a blog post of her own. I've also been and read Lene's post of the day, no surprise here she won a Canadian Blog Award as a writer.  I also found on Google a round up of links by Lounalune . I've just been sent another post by reader Myr for inclusion here. And another arrived this morning Gina @ InkyEd! a powerful meditation. I missed one from yesterday, from Kristine's fellow student at Loyalist, life with the belly monster. There are probably more, please put them in the comment section and I'll move them up here where it's easier for people to find them.

Cousin Mattie: The International Day of Mourning and Memory

Cousin Mattie scared me, not because of who she was, but because of what she represented. By the time that the whispers of her existence reached me, I knew I was different. I didn't have a name for it and it would be some blessed years before I first heard 'faggot' and 'gearbox' and 'homo'. The naming of my difference, apparently, was done by those who hated it. All I knew was that deep down inside me there was housed difference. It doesn't take children long to learn that difference is to be feared, to be beaten and to be bullied. I see all these advertisements about bullying on television and, though I applaud the effort and intent, I always feel that the message is always written by those who once bullied never by those who experienced it. Difference, at an early age, came to mean separate. That, I had learned before the whispers of Cousin Mattie. That, I hed learned early and well. I began building an inner home of safety with tiny baby fingers in which Lego blocks looked huge.

Though I couldn't name my difference, I could fear it. I feared what it meant, not as a descriptor but as a predictor. I knew that this nameless difference would mean loss and hatred and even violence. Cousin Mattie had a nameless difference too. She was spoken about in whispers. She was part of a conversation that adults had with adults. Cousin Mattie was only spoken about when we, children, were sent outside to play. I never saw Cousin Mattie. I never met her. Even so, her absence made her very present at family events. There was someone who's name had the power to silence conversation, who's name had the power to freeze adults to the spot, who's name had the ultimate power of shaming. Cousin Mattie lived elsewhere but her hand manage to grip the soul of my family.

As I grew older and brasher, I learned only that Cousin Mattie was 'slow'. I don't think the 'r word' was used to describe her. When it became clear to me that Cousin Mattie had been cast out for her difference, the realization rang a bell in me that has still not stopped sounding. Selfishly, I understood her as a warning, not as a person. I thought, then, little of where she was or what was happening to her, I thought only of me - and my difference. I looked at the faces of Aunts and Uncles, of Grandmothers and Grandfathers and, of course, Parents ... and knew, deep down, that I was already cast away. That I was loved, conditionally, that I was loved for the 'David worn' for public view, not the 'David lived' in private.

The existence of institutions that lock away the different was purportedly done by a society that willed to care for the 'less fortunate' - a term that itself reeks of prejudicial thinking, every time someone uses that term they stand a little taller knowing that fortune blessed them, that life gave them a prize and that God grace fell upon them. It's amazing how privilege is always believed to be deserved. Those institutions, where Cousin Mattie lived, to me were never about care, they stood as monuments to the tyranny of the norm. They stood as reminders to all that in a moment, in an instant, freedom and liberty and justice can cease to exist, replaced with policies and procedures and programmes. I didn't know where the 'away' was where Cousin Mattie lived, but I didn't need to know. What part of 'away' is hard to understand.

I still don't know where she lived and when she died. I do not know where she was buried. I do not know how she lived or how she died. She never knew that I never knew. Worse, she never knew that I cared to know. The fact of institutionalization, for it is still a fact, is a societal travesty that continues unrecognized. It is unrecognized for the damage that it did, not only to the lives of those with disabilities, but also to the large social psyche of humanity. We live in a society wherein, all over the world, thousand upon thousands of fellow humans, fellow citizens are caged. We live in a society where barbarity is called compassion and wherein the propaganda against the difference of disability goes unchallenged by all but those who know and experience disability. The testimony of those with disabilities as to our human status is seen as 'cute' and maybe 'charming' and maybe even 'inspirational' but it's never accepted as really true. The testimony of parents who embrace and love their kids with disabilities, who see them grow and see them learn is dismissed as denial and self delusion.

Cousin Mattie lived a life in whispers and in silence. But so too do those of us with disabilities who wish to be part of the debate about the value of our lives. So too do those who parent and those who marry and those who love us who would wish to raise a dissenting view. I am told that justice will prevail, but I do not believe this ... justice, as everyone knows is blind and therefore, like millions of disabled people, is busy looking for a job.

This day, the first 'International Day of Mourning and Memory for the Lives of People with Disabilites' was created to call attention to the crimes against the lives that could have been lived, that should have been shared. It is also dedicated to those who continue to rise and fight, who refuse to be silent, who advocate long past exhaustion. And it is here that I want to mention Cousin Mattie again.The only thing I know about her was that she was a difficult child - a defiant child. Cousin Mattie was a fighter. I think that is the only reason I ever heard of her at all. She had to be discussed, she must have fought hard against the constraints of her life, because, then as now, families come to meetings when people become problems. Cousin Mattie will never know what her life came to mean to me.

I understood, long before it became time to announce my difference, what it might cost me. I understood that there was a land called 'away'. And I wasn't afraid of that land - because I had family there.