They looked at us with expectant eyes. How can you refuse expectant eyes? Well, I have managed that for several years now. But, this time something was different. Ruby and Sadie have a Christmas Pageant coming up and, like every year before, we were invited to come. They had described, with great excitement and anticipation, what each of their classes were to perform, it was easy to see they were trying to pull us into the joy of it all and have us, both, accept.
Joe has been before.
I have never been.
I need to stop now and talk a little bit about the fact that words have impact. I need to remind you that purposeful and intentional hurt leaves bruises that never fade and wounds that will always, occasionally, weep. I am 63 years old, I will be 64 on the day of the pageant. And yet, in some ways, I am still a young boy who travelled through his childhood and youth as a soft, fat, non-masculine boy. I am still that boy who who woke nearly every morning with fear and anxiety about what the day would bring. Easily targeted, easily taunted, easily taken apart, bullies found myriad ways of making my life hell.
To this day.
To this very day.
If I hear someone laughing around me, my first gut reaction, is that they are laughing at me. Even though all these years later I know that this is seldom actually true, my gut reacts the way it reacts and it does so for a reason. I have lost the trust that I will ever be safe in this world.
And God, I love these kids.
They have been a gift to us and to our lives in ways that I cannot tell you.
I never want them hurt. I have explained to them that I haven't gone to school events because I fear that their love for me, their relationship with Joe and I, will bring them harm. I fear that the bullies in their school will use me, or us, to target them, to taunt them, to tease them. I fear that I will bring them pain.
And I can't have that.
I can't do that to them.
They know. I've told them. I don't go because I love them.
But every year, they ask.
And every year, they hope.
And this year, they asked again.
Sadie told me she would tell her teacher to make sure that I am safe and that people not tease me. I told her that I loved that she would do that but I wasn't worried that they would tease me. I was worried that they would tease her.
Ruby told me that there was nothing anyone could ever do that would make her feel ashamed of me or of her relationship with Joe and I. Nothing. She said it twice. Twice.
So they asked again.
And now I realize something. I have stayed away to keep them from hurt and now, its becoming clear that my staying away, my act of protection, has the ability to hurt them in a new and different way. Caring can look like not caring. Loving can look like not loving.
And I had a decision to make.
I've thought about it long and hard. Joe and I have talked about it. Last night I even prayed for advice.
I don't know if my prayer was answered but I rose knowing that I was going to go. That our presence there, together, with the rest of their family, mattered.
What happens after matters too.
But I cannot risk that my caution leads to a day that I fear, a day I hadn't thought about until I saw those expectant eyes.
The day they stop asking.
Tuesday, December 13, 2016
Monday, December 12, 2016
Whew
There are times when disability is simply exhausting. And I'm not even talking about simply the energy that it takes to manoeuvre in a world not created with you in mind, or dealing with the attitudes of those who feel that for the grace of God there they did not go. For me, this past couple of days, and looking at the calendar for the future, it's been a bout of planning and replanning and looking at this option and ruling out that possibility.
The break down of my wheelchair has made everything difficult. My scooter is really only to be used sparingly as it's really, really, really old and you can hear it working when it's driven. Though it's a sturdy machine, I don't want to over do it. For example, yesterday we had booked a ride down to the theatre where Joe and I and the girls were going to see 'Sleeping Beauty' a Holiday Panto but we'd not booked a ride back. We thought we'd all just walk home.
My flat tire chair would have no trouble with this, it isn't fazed by something like this, even though it's a long ride and uphill most of the way. But the scooter, the distance and the rise had me worried. I tried to get a ride with WheelTrans, last minute, and finally managed a ride that wasn't optimum for us, but it was sterling for the chair.
After we got home and the kids went back to their Dad's place, we had to sit and go through all our upcoming plans and figure out how we would manage, what changes we had to make and then decide if the energy needed was worth the effort. Happily we planned through it all and have strategies that allow us to make each event.
But it's work.
Really a lot of work.
There's a mental fatigue that comes from negotiating the world, even in the best of circumstances, with a disability - but wow, does that multiply quickly when a spanner is thrown into the works.
The break down of my wheelchair has made everything difficult. My scooter is really only to be used sparingly as it's really, really, really old and you can hear it working when it's driven. Though it's a sturdy machine, I don't want to over do it. For example, yesterday we had booked a ride down to the theatre where Joe and I and the girls were going to see 'Sleeping Beauty' a Holiday Panto but we'd not booked a ride back. We thought we'd all just walk home.
My flat tire chair would have no trouble with this, it isn't fazed by something like this, even though it's a long ride and uphill most of the way. But the scooter, the distance and the rise had me worried. I tried to get a ride with WheelTrans, last minute, and finally managed a ride that wasn't optimum for us, but it was sterling for the chair.
After we got home and the kids went back to their Dad's place, we had to sit and go through all our upcoming plans and figure out how we would manage, what changes we had to make and then decide if the energy needed was worth the effort. Happily we planned through it all and have strategies that allow us to make each event.
But it's work.
Really a lot of work.
There's a mental fatigue that comes from negotiating the world, even in the best of circumstances, with a disability - but wow, does that multiply quickly when a spanner is thrown into the works.
Sunday, December 11, 2016
Three Omens
Well, that wasn't planned.
The whole day was organized, to the minute, but when they say "shit happens" they ain't far wrong. We were at the hairdressers where Ruby and Sadie and their Mom were getting their hair done. We dropped in to visit but there was a special reason we were there, Ruby had decided, long ago, to grow her hair and then have it cut off and donated to a charity that made free wigs for kids going through treatment for cancer.
The day didn't auger well. There were three omens. First, the elevator was broken down necessitating a ride round to a kind of weird entrance that's never comfortable to use. Second, when going around to that entrance we found that you could not longer open the door because the handle was gone and it was solidly locked. We went round and told security. Third when Joe opened the door for me, he had stayed and gone in so he could do just that, he told me that it was going to be tough getting in because the disabled alternate entrance was blocked full of stuff. And he wasn't kidding. It was hard to get through.
I think that's when it happened, but I'm not certain.
We got up to the salon and everyone was figuring out what kind of hairstyle Ruby would have after the donation was made. I parked off to the side and simply joined in from afar with opinions and ideas. It was fun. Then I tried to drive over to see something more closely and I thought I'd run over something or that there was a barrier on the floor.
Nope.
My tire was dead!
DEAD.
The day crumbled before our eyes.
Joe came and got the scooter we use as a back up. I still thank that woman who wanted her scooter gifted to a fellow fatty because it's been a life saver several times now. The battery hadn't been charged for a year but Joe had got it over and we hoped it would get me back. Mike, the kids dad, offered to help push my power chair back home. It was a bit difficult to detach the wheels so this could be done. We've not ever done that for the 7 years I've had the chair. But it was done and the three of us left the womenfolk and got the power chair and me home.
Now, we've had to rearrange all the furniture to make things fit. I'm writing this while waiting to see everyone fresh from the hairdressers.
I have time to do this now because the rest of the day, see it over there, the plans and activities lay in complete disarray.
The whole day was organized, to the minute, but when they say "shit happens" they ain't far wrong. We were at the hairdressers where Ruby and Sadie and their Mom were getting their hair done. We dropped in to visit but there was a special reason we were there, Ruby had decided, long ago, to grow her hair and then have it cut off and donated to a charity that made free wigs for kids going through treatment for cancer.
The day didn't auger well. There were three omens. First, the elevator was broken down necessitating a ride round to a kind of weird entrance that's never comfortable to use. Second, when going around to that entrance we found that you could not longer open the door because the handle was gone and it was solidly locked. We went round and told security. Third when Joe opened the door for me, he had stayed and gone in so he could do just that, he told me that it was going to be tough getting in because the disabled alternate entrance was blocked full of stuff. And he wasn't kidding. It was hard to get through.
I think that's when it happened, but I'm not certain.
We got up to the salon and everyone was figuring out what kind of hairstyle Ruby would have after the donation was made. I parked off to the side and simply joined in from afar with opinions and ideas. It was fun. Then I tried to drive over to see something more closely and I thought I'd run over something or that there was a barrier on the floor.
Nope.
My tire was dead!
DEAD.
The day crumbled before our eyes.
Joe came and got the scooter we use as a back up. I still thank that woman who wanted her scooter gifted to a fellow fatty because it's been a life saver several times now. The battery hadn't been charged for a year but Joe had got it over and we hoped it would get me back. Mike, the kids dad, offered to help push my power chair back home. It was a bit difficult to detach the wheels so this could be done. We've not ever done that for the 7 years I've had the chair. But it was done and the three of us left the womenfolk and got the power chair and me home.
Now, we've had to rearrange all the furniture to make things fit. I'm writing this while waiting to see everyone fresh from the hairdressers.
I have time to do this now because the rest of the day, see it over there, the plans and activities lay in complete disarray.
Saturday, December 10, 2016
Danger on the Bus
We were successfully on the bus. I had had the sole responsibility for getting the kids up, dressed, fed, and on the bus on time for our trip to see Joe sing in the church choir. We worked together as a well oiled machine. I was strapped down up front and the girls were asked to sit in the two back seats as we were picking up another wheelchair user who would require the back entrance to the bus. The girls understood that they were making room, they know about respecting the space that people need, and took their seats.
We picked up a lovely woman, fresh out of church, who chatted with us for a few blocks and then she waved a goodbye as she got off at home. We made another stop, this time picking up a mother and son, also on their way to church. She spoke briefly to me and introduced her son saying, "He can't say nothing, so don't expect conversation." She laughed as if she'd made a joke. Then she sat right at the back, near the girls.
Once the bus started I heard her whispering to both Ruby and Sadie, I said, loudly and clearly, "Please speak up, don't whisper to the kids." She stopped for a second, then started whispering again, this time more quickly. Again I said, "Speak up, don't whisper to the girls." I had almost said their names but realized that I didn't want her knowing them. She whispered again, after another brief stop, but louder this time because of the noise of the bus. I heard the word "website" and now was frantic for her to shut up. I didn't want her talking to Ruby and Sadie about any "website" to visit. She made noise as she looked through her purse for a card to give to the girls, presumably with the website on it. I said, "Stop!" But she didn't. The card was passed to Ruby.
We were at our stop now and Ruby and Sadie sprang from their seats and headed to the door at the front. I asked Ruby as she passed me if she had the card the woman had given her, she nodded and handed it to me. I asked if Sadie had a card too, she said 'No' and I suggested that she shouldn't visit websites that strangers suggest without an adult looking at them. She and Sadie nodded but the conversation was stalling them from what they wanted to to do, which was, get off the bus.
I got off as well and stopped to look at the card. It was from a religious group that is known for publicly proselytizing. I don't adhere to many of their beliefs, but respect their right to believe whatever they wish. I even respect those who stand on the street and thereby publicly identifying their faith.But faith that's whispered in the back of buses to children against the wish of their supervising adult, that I don't respect.
I respect you, you need to respect me.
Of course I wrote to the bus company about my concerns but was told that this is not an issue they can deal with in any meaningful way. I suspected that would be the case but felt that I needed to alert them in any case.
We've all talked about this and about how both kids could have spoken up when they first felt uncomfortable with the woman's whispers. But they, like many kids, identify stranger danger as being a male phenomenon, not a nice, old woman on a bus where they have always felt safe before.
But danger has many faces.
Danger doesn't have a single gender.
Danger isn't any particular age.
And for me, I know that next time, there will be two other voices protesting. That means the job is nearly done.
We picked up a lovely woman, fresh out of church, who chatted with us for a few blocks and then she waved a goodbye as she got off at home. We made another stop, this time picking up a mother and son, also on their way to church. She spoke briefly to me and introduced her son saying, "He can't say nothing, so don't expect conversation." She laughed as if she'd made a joke. Then she sat right at the back, near the girls.
Once the bus started I heard her whispering to both Ruby and Sadie, I said, loudly and clearly, "Please speak up, don't whisper to the kids." She stopped for a second, then started whispering again, this time more quickly. Again I said, "Speak up, don't whisper to the girls." I had almost said their names but realized that I didn't want her knowing them. She whispered again, after another brief stop, but louder this time because of the noise of the bus. I heard the word "website" and now was frantic for her to shut up. I didn't want her talking to Ruby and Sadie about any "website" to visit. She made noise as she looked through her purse for a card to give to the girls, presumably with the website on it. I said, "Stop!" But she didn't. The card was passed to Ruby.
We were at our stop now and Ruby and Sadie sprang from their seats and headed to the door at the front. I asked Ruby as she passed me if she had the card the woman had given her, she nodded and handed it to me. I asked if Sadie had a card too, she said 'No' and I suggested that she shouldn't visit websites that strangers suggest without an adult looking at them. She and Sadie nodded but the conversation was stalling them from what they wanted to to do, which was, get off the bus.
I got off as well and stopped to look at the card. It was from a religious group that is known for publicly proselytizing. I don't adhere to many of their beliefs, but respect their right to believe whatever they wish. I even respect those who stand on the street and thereby publicly identifying their faith.But faith that's whispered in the back of buses to children against the wish of their supervising adult, that I don't respect.
I respect you, you need to respect me.
Of course I wrote to the bus company about my concerns but was told that this is not an issue they can deal with in any meaningful way. I suspected that would be the case but felt that I needed to alert them in any case.
We've all talked about this and about how both kids could have spoken up when they first felt uncomfortable with the woman's whispers. But they, like many kids, identify stranger danger as being a male phenomenon, not a nice, old woman on a bus where they have always felt safe before.
But danger has many faces.
Danger doesn't have a single gender.
Danger isn't any particular age.
And for me, I know that next time, there will be two other voices protesting. That means the job is nearly done.
Friday, December 09, 2016
12 Days Dis Christmas
Please feel free to make suggestions for changes ... I'd like this to be fun and funny and accurate ... so I'm open to making changes:
12 Days Dis Christmas
On the first day of Christmas my true love gave to me:
an apartment I can poo in.
On the second day of Christmas my true love gave to me:
two grab bars
On the third day of Christmas my true love gave to me:
three wide aisles
On the fourth day of Christmas my true love gave to me:
Four auto doors
On the fifth day of Christmas my true love gave to me:
Five lovely ramps
On the sixth day of Christmas my true love gave to me:
Six pubs-a-kessible
On the seventh day of Christmas my true love gave to me:
Seven seating options
On the eighth day of Christmas my true love gave to me:
Eight clerks with normal voices
On the ninth day of Christmas my true love gave to me:
Nine inclusive schools
On the tenth day of Christmas my true love gave to me:
Ten roll in showers
On the eleventh day of Christmas my true love gave to me:
Eleven accessible buses
On the twelfth day of Christmas my true love gave to me:
What I really wanted ... just one piece of legislation, with teeth, that made these things my rights, not someone's gifts.
Thursday, December 08, 2016
A Gift or A Given
He arrived just as I was nearing the end of the aisle. Because of the displays a narrow passageway had been created. One person at a time would be able to make it through. I am expert now in knowing if my chair will fit through any particular space and was sure it would accommodate me. But he got there first and was standing blocking the passageway looking at something on the display.
I was in a bit of a rush and said to him politely ... let me pause here and state that I know how to modulate my voice to make a request of a non-disabled person ... it has to be a little bit 'Tiny Tim' and a little bit 'stranded waif' and a little bit 'poor weak thing' and a lot of 'I'd be so grateful' ... I know how to use that voice because I use it all the time just to make a request that people get out of my damn way. So, unpause ... I said to him politely, "Could I just slip through here please?"
He looks at me and is immediately annoyed. Maybe because I don't look like Tiny Tim or a Stranded Waif or a Poor Weak Thing, in any case, he said, "You'll have to wait, I'm shopping."
Now here's the thing, I'm not Tiny Tim or a Stranded Waif or a Poor Weak Thing and I'm not full of gratitude for people simply behaving in a civil manner when in public spaces, even though I use that voice to get people to move their carts or their kids or their asses out of my pathway. So, I said, in a much different voice, "Look, I'm only asking that you let me by, I'm not asking you to give up anything more than a moment or two, what's the big deal?"
The change in tone surprised him and said, "Why do you expect to be treated differently just because you are in a wheelchair, and by the way if you drop a bit of weight, you'd not need those wheels."
"OK, Dr. Jerk, MD. You've made a misdiagnosis my weight and my disability are separate issues. And here's the thing, I'm not asking for something special, you are blocking a pathway that the smallest of children would have to ask you to move. This wasn't a disabled request it's an anyone request. But not to worry, I'll back up and you won't have to be disturbed from living your life as an asshole."
He's mad now and says, "Alright, just get the fuck by," and he moves.
"No," I said, "I'll back up, you stay in asshole rut, and see where that takes you a few years from now."
"Don't call me an asshole and aren't you being an asshole for backing all the way back down the aisle when I've moved."
I'm further from him now and I stop, look at him, and say, "I want nothing from you. Nothing."
And there ended another moment in the pleasant life of being disabled and needing space in a world where disabled people live with space a gift rather than a given.
I was in a bit of a rush and said to him politely ... let me pause here and state that I know how to modulate my voice to make a request of a non-disabled person ... it has to be a little bit 'Tiny Tim' and a little bit 'stranded waif' and a little bit 'poor weak thing' and a lot of 'I'd be so grateful' ... I know how to use that voice because I use it all the time just to make a request that people get out of my damn way. So, unpause ... I said to him politely, "Could I just slip through here please?"
He looks at me and is immediately annoyed. Maybe because I don't look like Tiny Tim or a Stranded Waif or a Poor Weak Thing, in any case, he said, "You'll have to wait, I'm shopping."
Now here's the thing, I'm not Tiny Tim or a Stranded Waif or a Poor Weak Thing and I'm not full of gratitude for people simply behaving in a civil manner when in public spaces, even though I use that voice to get people to move their carts or their kids or their asses out of my pathway. So, I said, in a much different voice, "Look, I'm only asking that you let me by, I'm not asking you to give up anything more than a moment or two, what's the big deal?"
The change in tone surprised him and said, "Why do you expect to be treated differently just because you are in a wheelchair, and by the way if you drop a bit of weight, you'd not need those wheels."
"OK, Dr. Jerk, MD. You've made a misdiagnosis my weight and my disability are separate issues. And here's the thing, I'm not asking for something special, you are blocking a pathway that the smallest of children would have to ask you to move. This wasn't a disabled request it's an anyone request. But not to worry, I'll back up and you won't have to be disturbed from living your life as an asshole."
He's mad now and says, "Alright, just get the fuck by," and he moves.
"No," I said, "I'll back up, you stay in asshole rut, and see where that takes you a few years from now."
"Don't call me an asshole and aren't you being an asshole for backing all the way back down the aisle when I've moved."
I'm further from him now and I stop, look at him, and say, "I want nothing from you. Nothing."
And there ended another moment in the pleasant life of being disabled and needing space in a world where disabled people live with space a gift rather than a given.
Tuesday, December 06, 2016
The Heart As A Strategy
Joe was in the choir on Sunday. He'd been working toward this for a couple of week, dutifully heading off to choir practices even when he didn't much feel like it. He was singing in both morning services but as Ruby and Sadie were spending the weekend with us, we decided that the three of us would join Joe for the later service and then all come home together. This meant that the kids would be my responsibility from getting them up to getting them on the bus.
Both Ruby and Sadie are very aware of how we adapt routines when I'm the one whose role it is to get it all done. It had gone very, very smoothly and we even had a bit of time to sit and chat before we had to go down to the bus. Ruby headed off to their bedroom to get something she wanted and Sadie and I fell into chat about school. She began telling me about three kids who aren't very nice to her. She identified that they mostly excluded her from activities that she wanted to join, that they didn't hit her or call her names, but even so, she recognized that exclusion was, in her words, :"still like bullying."
She's right of course.
I asked her how it made her feel when that happened and she said that it hurt her feelings but "only a little bit." I told her that I was glad it was only a little bit but sad that her feelings were hurt at all. Then I asked what does she do when this happens. She said, "I go an play with my friends." That sounded reasonable and I said "and that's why it only hurts a little bit because you've got friends there?" She looked at me and said, "No." Curious, I asked, "Why does it only hurt a little bit then?" She said, "Because I only let people who are nice to me into my heart. That's why they can't hurt me very much."
I was bowled over.
That's a great strategy.
I told her that I hope she kept doing what she was doing her whole life long.
And then I asked myself why I wasn't doing the same.
Both Ruby and Sadie are very aware of how we adapt routines when I'm the one whose role it is to get it all done. It had gone very, very smoothly and we even had a bit of time to sit and chat before we had to go down to the bus. Ruby headed off to their bedroom to get something she wanted and Sadie and I fell into chat about school. She began telling me about three kids who aren't very nice to her. She identified that they mostly excluded her from activities that she wanted to join, that they didn't hit her or call her names, but even so, she recognized that exclusion was, in her words, :"still like bullying."
She's right of course.
I asked her how it made her feel when that happened and she said that it hurt her feelings but "only a little bit." I told her that I was glad it was only a little bit but sad that her feelings were hurt at all. Then I asked what does she do when this happens. She said, "I go an play with my friends." That sounded reasonable and I said "and that's why it only hurts a little bit because you've got friends there?" She looked at me and said, "No." Curious, I asked, "Why does it only hurt a little bit then?" She said, "Because I only let people who are nice to me into my heart. That's why they can't hurt me very much."
I was bowled over.
That's a great strategy.
I told her that I hope she kept doing what she was doing her whole life long.
And then I asked myself why I wasn't doing the same.
Monday, December 05, 2016
Gift Wrapped Foot in Mouth
Have you ever wanted to grab words, that have spilled out of your mouth, and pull them back. Make the said, unsaid? I was chatting with a woman who had told me only a few minutes before that she wasn't looking forward to the holidays this year because times were tight. She had managed to get things for her kids but every penny she spent in one place had to be carefully cut out from another. She was tired.
But we had left that conversation and had moved on to another, I was talking about Ruby and Sadie and how they have changed the holiday season for us. We've always loved it, but it's even more exciting with tyrannical elves on shelves and plates of cookies for Santa. It's a great season.
Then, in excitement I began talking about the gift we picked up for the kids, for the first time the parents don't know what it is, the girls don't know what it is and it's a gift that both Joe and I think is very cool. I talked about how hard it was to find, how we tracked one down and how we snatched it up.
While the gift isn't outrageously priced, it's not cheap either.
As I'm talking I'm actually really hearing the earlier conversation. About someone who is having difficulty making ends meet over the holidays, who is struggling to get gifts. I had heard the conversation but I hadn't really HEARD it, it hadn't sunk deeply enough in my consciousness to have the impact that it should have.
After having listened to her, in my mind, minutes too late, I then, and it was awful, heard me. Bleating on about searching for this gift and how we managed to get it. It was unnecessary twattle that sounded a lot like, well, I don't want to say.
I need to listen in the moment.
Not later after I've already put my foot in it.
Throughout my quickly finishing up my gift chat and moving on to something else, she was kind and let me change the subject. We chatted for a few more minutes and then wished each other happy holidays.
May one day my mouth and mind be subject to my ears.
But we had left that conversation and had moved on to another, I was talking about Ruby and Sadie and how they have changed the holiday season for us. We've always loved it, but it's even more exciting with tyrannical elves on shelves and plates of cookies for Santa. It's a great season.
Then, in excitement I began talking about the gift we picked up for the kids, for the first time the parents don't know what it is, the girls don't know what it is and it's a gift that both Joe and I think is very cool. I talked about how hard it was to find, how we tracked one down and how we snatched it up.
While the gift isn't outrageously priced, it's not cheap either.
As I'm talking I'm actually really hearing the earlier conversation. About someone who is having difficulty making ends meet over the holidays, who is struggling to get gifts. I had heard the conversation but I hadn't really HEARD it, it hadn't sunk deeply enough in my consciousness to have the impact that it should have.
After having listened to her, in my mind, minutes too late, I then, and it was awful, heard me. Bleating on about searching for this gift and how we managed to get it. It was unnecessary twattle that sounded a lot like, well, I don't want to say.
I need to listen in the moment.
Not later after I've already put my foot in it.
Throughout my quickly finishing up my gift chat and moving on to something else, she was kind and let me change the subject. We chatted for a few more minutes and then wished each other happy holidays.
May one day my mouth and mind be subject to my ears.
Sunday, December 04, 2016
One Ride Two Perspectives
I got on the bus, heading to my work's annual holiday party, looking forward to the evening ahead. It's nice to spend time with people without the pressures of day to day demands. The driver wasn't chatty. At all. I asked him how many pickups and drop offs before we got to where I was going, he never acknowledged the question and simply kept driving. OK, I can live with mystery.
Eventually we stopped and picked up a young mother and two girls. The girls raced on the bus and raced to the seats they wanted. It seems it was a race. It was the first of many races and competitions they would have throughout the portion of the trip that I shared with them. If I closed my eyes and listened, they sounded just like Ruby and Sadie, so, therefore, I loved it. Mom was helped on to the bus by the driver. She was in a very cool looking manual chair, she nodded hello and before she could say anything else I said, "The sound of kids having fun never gets old does it?" She smiled and said, "Well, maybe sometimes." I laughed and we were off to a good start.
We didn't chat much, but somewhere in there I told her that her wheelchair was cool. The girls, both who had been listening to us talk, immediately spoke up, "Cool! Wheelchairs aren't cool!!" Then a lively debate happening. Mom didn't enter in, she just listened to me and to her kids. I explained about how much fun it was to go down hills and to quickly turn in a circle and to get your wheels wet and then draw on pavement. The conceded that some of that did sound found.
I got a little more serious, while keeping it light, and I told them that my wheelchair set me free and said, "If that's not cool, I don't know what is?" The freedom idea caught them and I knew they understood. Then we make an awkward turn into an awkward parking lot and the bus rocks. I wondered if they were home now but I didn't think so because of their reaction to the rolling of the bus.
The driver gets out and an older gentleman, using a walker due to a life long disability, struggled up the ramp. He got on, grinned at all of us and made his was to the back to sit in one of the seats in the very back. It turns out he is a teacher and he entertains himself by chatting with the girls. He has a real ease with them and the fact that he's probably 70 years older than the girls didn't matter. They chatted with him about school and other stuff.
Then he said, "Which one of you takes care of your mother?" The woman beside me, the girls mom, turned and looked at me in shock. The girls said, almost at the same time, like they've said it before, "We don't take care of her, she takes care of us." He pushed a bit and they acknowledged that there were things the did to help out. Finally he said, "Well, if you've not taking care of her now you will be one day, so you have to practice."
We'd gone from "wheelchairs are cool" to "people in wheelchairs are burdens," in the matters of moments and both messages were given by disabled people to these children. Their mother, shushed them when they began discussing, 'cool or burden' in the back between themselves.' "We'll talk about this at home she said," with an anger that I knew didn't stem from anything the girls had done.
We pulled into the banquet hall and I said my goodbye's. I rode down the ramp saying to the girls as I got off, "See, cool?"
Eventually we stopped and picked up a young mother and two girls. The girls raced on the bus and raced to the seats they wanted. It seems it was a race. It was the first of many races and competitions they would have throughout the portion of the trip that I shared with them. If I closed my eyes and listened, they sounded just like Ruby and Sadie, so, therefore, I loved it. Mom was helped on to the bus by the driver. She was in a very cool looking manual chair, she nodded hello and before she could say anything else I said, "The sound of kids having fun never gets old does it?" She smiled and said, "Well, maybe sometimes." I laughed and we were off to a good start.
We didn't chat much, but somewhere in there I told her that her wheelchair was cool. The girls, both who had been listening to us talk, immediately spoke up, "Cool! Wheelchairs aren't cool!!" Then a lively debate happening. Mom didn't enter in, she just listened to me and to her kids. I explained about how much fun it was to go down hills and to quickly turn in a circle and to get your wheels wet and then draw on pavement. The conceded that some of that did sound found.
I got a little more serious, while keeping it light, and I told them that my wheelchair set me free and said, "If that's not cool, I don't know what is?" The freedom idea caught them and I knew they understood. Then we make an awkward turn into an awkward parking lot and the bus rocks. I wondered if they were home now but I didn't think so because of their reaction to the rolling of the bus.
The driver gets out and an older gentleman, using a walker due to a life long disability, struggled up the ramp. He got on, grinned at all of us and made his was to the back to sit in one of the seats in the very back. It turns out he is a teacher and he entertains himself by chatting with the girls. He has a real ease with them and the fact that he's probably 70 years older than the girls didn't matter. They chatted with him about school and other stuff.
Then he said, "Which one of you takes care of your mother?" The woman beside me, the girls mom, turned and looked at me in shock. The girls said, almost at the same time, like they've said it before, "We don't take care of her, she takes care of us." He pushed a bit and they acknowledged that there were things the did to help out. Finally he said, "Well, if you've not taking care of her now you will be one day, so you have to practice."
We'd gone from "wheelchairs are cool" to "people in wheelchairs are burdens," in the matters of moments and both messages were given by disabled people to these children. Their mother, shushed them when they began discussing, 'cool or burden' in the back between themselves.' "We'll talk about this at home she said," with an anger that I knew didn't stem from anything the girls had done.
We pulled into the banquet hall and I said my goodbye's. I rode down the ramp saying to the girls as I got off, "See, cool?"
Saturday, December 03, 2016
Future? International Day of Disabled People
As I was thinking about today, International Day of Disabled Persons I came across a link that completely turned around my thinking. The theme this year was about the future. I hadn't read the theme closely but I was happily thinking about tomorrow's tomorrow and what that might look like for disabled people.
But, the constant devaluation of the lives to people with disabilities to the point where our murder isn't murder, where we aren't worthy enough for our lives to be considered stolen from us. I thought that really, people with disabilities don't have the luxury of 'future' when the present and the past are still so horrific.
Where millions of people with disabilities are still locked away in institutions.
Where our skin is shocked as punishment and our hunger used as a motivator for good behaviour.
Where our deaths are measured, not in tears shed but in dollars saved.
Where we are never really guaranteed freedom, or equality, or opportunity.
Where the pursuit of happiness begins up a set of stairs.
We can't get to future. We can't get to tomorrow. We still have to still the voices of today and squelch the practices of yesterday. We have to fight bigotry born of ignorance and hatred. We have to demand space, we can't even imagine safe space yet, that's, perhaps the future they talk about.
I want the past to finally be the past.
I want the present to be catalogued and put away.
I want to leave my home secure in the knowledge that I will not suffer social violence and ignorant assumptions.
I want to open my mouth and have my words weighed equally with the words of others.
I want to breath freely, without the constriction in my chest from knowing that others, others like me, are caged, prosecuted and found guilty of the crime of difference.
I want the past to be the past.
I want to close the door.
I want to lock it.
I want to feel secure that some politician, some ethicist, some accountant, won't find the key and a head for that door at their first opportunity.
Future.
I don't have time for future.
The past is still taking all my time.
But, the constant devaluation of the lives to people with disabilities to the point where our murder isn't murder, where we aren't worthy enough for our lives to be considered stolen from us. I thought that really, people with disabilities don't have the luxury of 'future' when the present and the past are still so horrific.
Where millions of people with disabilities are still locked away in institutions.
Where our skin is shocked as punishment and our hunger used as a motivator for good behaviour.
Where our deaths are measured, not in tears shed but in dollars saved.
Where we are never really guaranteed freedom, or equality, or opportunity.
Where the pursuit of happiness begins up a set of stairs.
We can't get to future. We can't get to tomorrow. We still have to still the voices of today and squelch the practices of yesterday. We have to fight bigotry born of ignorance and hatred. We have to demand space, we can't even imagine safe space yet, that's, perhaps the future they talk about.
I want the past to finally be the past.
I want the present to be catalogued and put away.
I want to leave my home secure in the knowledge that I will not suffer social violence and ignorant assumptions.
I want to open my mouth and have my words weighed equally with the words of others.
I want to breath freely, without the constriction in my chest from knowing that others, others like me, are caged, prosecuted and found guilty of the crime of difference.
I want the past to be the past.
I want to close the door.
I want to lock it.
I want to feel secure that some politician, some ethicist, some accountant, won't find the key and a head for that door at their first opportunity.
Future.
I don't have time for future.
The past is still taking all my time.
Thursday, December 01, 2016
The Other Option
It was hard for him.
I was even harder for the staff.
And harder still for his parents.
But, oh my, was it worth it.
A discussion was happening about a fellow with an intellectual disability, regarding his future, in which a fairly major decision needed to be made. It was a decision that would alter the course of his life. Everyone was really concerned and everyone really cared about him and his well being. When this made it's way to my table my first question was, of course, "Well, what does he think about it?"
No one had an answer.
When pressed people were able to tell me what they thought he might think, but no one actually knew. I sensed embarrassment from everyone involved, we all do know better. But it's easy isn't it, to just subtly, and without meaning to, and certainly without malice, simply take control of another's life. And it's easy for people with disabilities to get used to riding the passenger seat as they journey from year to year.
So, the first decision was made.
Then the second.
It was first decided to ask him.
The second decision, was, simply, to listen to him.
Everyone expressed agreement amid a lot of concerns. Parents were worried he'd make the wrong decision. Staff were worried that he'd make a wrong decision. The clinician was worried the he'd make either of those two decisions when obviously a third option was the better choice. They all saw his life clearly and saw where he should be going. But each, if they were moving player pieces would be playing a different game.
But worried or not, he was asked.
And now he was worried. He knew what everyone wanted him to do, he knew everyone was at cross purposes but he knew that whatever he did, there would be those who disapproved and those who thought he did wrong and those who, maybe even, would be upset.
So.
He tried to opt out.
He tried to get the team to decide.
It was really, really, really, and I need to say again, really, hard for people to stand back. Give information, not opinions, and then only if asked.
Today.
He decided.
On his own.
Perhaps the very first decision he's ever made free of pressure, free of attempts to influence, free of any kind of influence.
It was hard for him.
And he did cry.
But.
Today he decided.
He chose a 4th option that no one had talked about. He chose something that fit him like a well tailored suit. He chose something that was so uniquely him that only he would have been able to see it hiding amongst the options offered to him.
Not everyone is completely happy.
But he is.
And he's proud too.
The only thing that everyone agreed on was that it was time.
Time for him to speak freely and take control.
He is 62 years old.
I was even harder for the staff.
And harder still for his parents.
But, oh my, was it worth it.
A discussion was happening about a fellow with an intellectual disability, regarding his future, in which a fairly major decision needed to be made. It was a decision that would alter the course of his life. Everyone was really concerned and everyone really cared about him and his well being. When this made it's way to my table my first question was, of course, "Well, what does he think about it?"
No one had an answer.
When pressed people were able to tell me what they thought he might think, but no one actually knew. I sensed embarrassment from everyone involved, we all do know better. But it's easy isn't it, to just subtly, and without meaning to, and certainly without malice, simply take control of another's life. And it's easy for people with disabilities to get used to riding the passenger seat as they journey from year to year.
So, the first decision was made.
Then the second.
It was first decided to ask him.
The second decision, was, simply, to listen to him.
Everyone expressed agreement amid a lot of concerns. Parents were worried he'd make the wrong decision. Staff were worried that he'd make a wrong decision. The clinician was worried the he'd make either of those two decisions when obviously a third option was the better choice. They all saw his life clearly and saw where he should be going. But each, if they were moving player pieces would be playing a different game.
But worried or not, he was asked.
And now he was worried. He knew what everyone wanted him to do, he knew everyone was at cross purposes but he knew that whatever he did, there would be those who disapproved and those who thought he did wrong and those who, maybe even, would be upset.
So.
He tried to opt out.
He tried to get the team to decide.
It was really, really, really, and I need to say again, really, hard for people to stand back. Give information, not opinions, and then only if asked.
Today.
He decided.
On his own.
Perhaps the very first decision he's ever made free of pressure, free of attempts to influence, free of any kind of influence.
It was hard for him.
And he did cry.
But.
Today he decided.
He chose a 4th option that no one had talked about. He chose something that fit him like a well tailored suit. He chose something that was so uniquely him that only he would have been able to see it hiding amongst the options offered to him.
Not everyone is completely happy.
But he is.
And he's proud too.
The only thing that everyone agreed on was that it was time.
Time for him to speak freely and take control.
He is 62 years old.
Quilts: World AIDS Day
We were surrounded by death, and memories and a sense of deep, deep, loss.
When we first entered the room we didn't understand what we were seeing. The accessible entrance is off to the side and back a bit. We saw that the room had large quilts hanging from the balcony above, effectively making a smaller room within the larger one. I rolled through a space between two quilts and then looked up.
And was punched in the gut.
These were quilts that were made, spanning about 10 years, to note the deaths and commemorate the lives of those who died during the AIDS epidemic. They were made as it was happening. The emotion and sentiment that rose from the words written in memory were those who were in the midst of a keening, angry kind of grief. I rode around and the first person, of many, who I recognized was Robert.
Robert.
A pain struck my heart when I realized that I had forgotten Robert. I hadn't thought of him for years. But seeing his picture, reading the words written to celebrate his life and mourn his loss, I was flooded with images in my mind. I remembered particularly the effort that Robert went into to plan a birthday party for Phil, his lover - they weren't allowed to marry in those days.
We all knew it would be Phil's last birthday. Phil a wonderful, gentle man, with a wicked sense of humour and who had loved Robert passionately. He pretended that he didn't know of the party. He knew how much it meant to Robert, and he fought to live until his birthday. And he did.
But the party had to be moved to the bedroom. Phil was too weak to leave his bed. But what a party we had. It was joyous. We partied as if it were the last party before the end of the world. Because we all knew that's exactly what it was. Phil, in his bed, looked like he was on a raft sailing to the edge of time. He was so small. His smile huge in a face of skin and bone. He took presents he would never use and thanked people. He understood that each gift represented, for each of us, a wish we had for his future, a future in which he would live and thrive, a future he didn't have but that we would give him if we could.
Phil died days after the party.
Robert a year or so later.
They were both gone.
In front of me was a picture of Robert, on a quilt that kept his memory alive, and warm, and real. I called Joe over to see the photo and the words written beside it. We stood together for a moment and then backed up to the middle of the room and turned, there were names and photographs of so many people, so many very young people. For a second we were back in time, back in the midst of death after death after death after death after death.
When we left the room within a room. When we left the room draped by sorrow and loss and lives celebrated long before they should have been, we entered a different world. A world that believes that AIDS isn't what it is and doesn't do what it does. A world that refused to acknowledge the reality of AIDS then and a world that refuses to acknowledge the reality of AIDS now.
It's World AIDS Day today.
And I remember a raft at the edge of time and a party at the end of the world. And I remember what that meant then and what that means now.
It's not much, but it's all I've got to give.
I remember.
When we first entered the room we didn't understand what we were seeing. The accessible entrance is off to the side and back a bit. We saw that the room had large quilts hanging from the balcony above, effectively making a smaller room within the larger one. I rolled through a space between two quilts and then looked up.
And was punched in the gut.
These were quilts that were made, spanning about 10 years, to note the deaths and commemorate the lives of those who died during the AIDS epidemic. They were made as it was happening. The emotion and sentiment that rose from the words written in memory were those who were in the midst of a keening, angry kind of grief. I rode around and the first person, of many, who I recognized was Robert.
Robert.
A pain struck my heart when I realized that I had forgotten Robert. I hadn't thought of him for years. But seeing his picture, reading the words written to celebrate his life and mourn his loss, I was flooded with images in my mind. I remembered particularly the effort that Robert went into to plan a birthday party for Phil, his lover - they weren't allowed to marry in those days.
We all knew it would be Phil's last birthday. Phil a wonderful, gentle man, with a wicked sense of humour and who had loved Robert passionately. He pretended that he didn't know of the party. He knew how much it meant to Robert, and he fought to live until his birthday. And he did.
But the party had to be moved to the bedroom. Phil was too weak to leave his bed. But what a party we had. It was joyous. We partied as if it were the last party before the end of the world. Because we all knew that's exactly what it was. Phil, in his bed, looked like he was on a raft sailing to the edge of time. He was so small. His smile huge in a face of skin and bone. He took presents he would never use and thanked people. He understood that each gift represented, for each of us, a wish we had for his future, a future in which he would live and thrive, a future he didn't have but that we would give him if we could.
Phil died days after the party.
Robert a year or so later.
They were both gone.
In front of me was a picture of Robert, on a quilt that kept his memory alive, and warm, and real. I called Joe over to see the photo and the words written beside it. We stood together for a moment and then backed up to the middle of the room and turned, there were names and photographs of so many people, so many very young people. For a second we were back in time, back in the midst of death after death after death after death after death.
When we left the room within a room. When we left the room draped by sorrow and loss and lives celebrated long before they should have been, we entered a different world. A world that believes that AIDS isn't what it is and doesn't do what it does. A world that refused to acknowledge the reality of AIDS then and a world that refuses to acknowledge the reality of AIDS now.
It's World AIDS Day today.
And I remember a raft at the edge of time and a party at the end of the world. And I remember what that meant then and what that means now.
It's not much, but it's all I've got to give.
I remember.
Wednesday, November 30, 2016
Permission
Something happened to me today that's never happened to me before. I'm nearly 64 so that takes some doing. It was a simple thing really, but it took me aback.
We were in the line up at the grocery store, we both nodded to the woman working there as she is often assigned the accessible till. She is an older woman who speaks English well, though her accent, combined with the noise of the store, and I add reluctantly, my age means that I sometimes have to listen very carefully to hear what she is saying.
As she checked out our stuff I noticed that she had a locked display case holding for scratch and win lottery tickets. I am a sucker for an impulse buy so I asked her if I could have all four of the remaining tickets. She had to get a manager to come with a key, which she did, and the tickets were out and being scanned.
When we were done and the groceries were paid for, she picked up the tickets that I had asked for and ... Well let's start with what she didn't do. She didn't do what everyone else has ever done when I've been a victim of my impulses in the past, she didn't just hand them to Joe. Now, I never really noticed, we are together, he's closer to the cashier and handing them to him seemed natural. But, she didn't do that.
What did she do differently?
She looked at me and said, "Is it OK for me to give these to him?"
She enunciated very carefully every word, she wanted my permission to give lottery tickets to the person I was with.
I thanked her for asking and said that it was fine to give them to him. She smiled, said, "I thought it would be," and handed them to Joe.
She thought it would be acceptable to give them to Joe but even with that assumption she asked my permission first.
You might think that a small thing, maybe even to small to write about, but gosh it was big to me. I liked it. I liked being asked permission. I liked being put in the position of deciding what happened next.
So often I don't notice when assumptions are made and Joe is automatically deemed the responder, the receiver, the prime mover. And this was one of those times.
Not again though.
Not again.
We were in the line up at the grocery store, we both nodded to the woman working there as she is often assigned the accessible till. She is an older woman who speaks English well, though her accent, combined with the noise of the store, and I add reluctantly, my age means that I sometimes have to listen very carefully to hear what she is saying.
As she checked out our stuff I noticed that she had a locked display case holding for scratch and win lottery tickets. I am a sucker for an impulse buy so I asked her if I could have all four of the remaining tickets. She had to get a manager to come with a key, which she did, and the tickets were out and being scanned.
When we were done and the groceries were paid for, she picked up the tickets that I had asked for and ... Well let's start with what she didn't do. She didn't do what everyone else has ever done when I've been a victim of my impulses in the past, she didn't just hand them to Joe. Now, I never really noticed, we are together, he's closer to the cashier and handing them to him seemed natural. But, she didn't do that.
What did she do differently?
She looked at me and said, "Is it OK for me to give these to him?"
She enunciated very carefully every word, she wanted my permission to give lottery tickets to the person I was with.
I thanked her for asking and said that it was fine to give them to him. She smiled, said, "I thought it would be," and handed them to Joe.
She thought it would be acceptable to give them to Joe but even with that assumption she asked my permission first.
You might think that a small thing, maybe even to small to write about, but gosh it was big to me. I liked it. I liked being asked permission. I liked being put in the position of deciding what happened next.
So often I don't notice when assumptions are made and Joe is automatically deemed the responder, the receiver, the prime mover. And this was one of those times.
Not again though.
Not again.
Tuesday, November 29, 2016
Her Joke
"Hey Dave," she typed.
There are several people with intellectual disabilities that I know and keep in touch with through Facebook and Facebook messenger. Most of the time it's just quick check ins but sometimes it's more in depth than that. I recently had a discussion, for example, with a man who wanted to know the best way he could talk to his boss about being teased by co-workers. That turned into a fairly long discussion that is still, month's later, not quite done.
But then there is a woman with an intellectual disability who contacts me with jokes and horrible puns. I like her and I like the jokes but she knows that it's very, very hard to make me laugh. I smile, a lot, but I don't laugh much. Poor Joe, he laughs at everything and I laugh at nothing. It's our version of Jack Sprat and his wife.
This time, she got me though.
With a really funny joke.
"What's plain language for 'Please leave me alone and let me do it myself?"
I liked the question when I first read it, without knowing the answer. I liked that the joke was a disability 'in joke' and that, more intimately, it was an 'in joke' between us. She constantly calls on me to use plain language when we chat, and she does it even when the language is very clear. She follows the question up with an LOL, or more commonly, LMFAO.
Ha Ha, I didn't laugh.
So I expected a groaner as would be our history but instead I, Laughed Out Loud.
So, here it is ...
"What's plain language for 'Please leave me alone and let me do it myself."
"Fuck off?"
I laughed even as I typed it.
Saucy. Cheeky. Vulgar. Funny. All wrapped up in a conversation that would have been impossible for me to have, because of technology and because of repressive practices, a mere few years ago.
Ain't it freaking grand.
Monday, November 28, 2016
Being Accessible
I went out shopping today to buy gifts for some people on my list. Joe was one of them, so Joe didn't come with me. My first stop was the Bay store near me, I knew exactly what I wanted, exactly where everything was and hoped to get in and out without fuss.
As it's the holidays it's no surprise that there are lots of things placed in the aisles but they were well spaced and I could easily navigate around them. This is a store where I've had several battles about placements of displays and I was cheered to see that they were there but they weren't in any way a hindrance.
But, as with many well made plans, it didn't go as I expected. The one section I really needed to go was completely impassable. I could see what I wanted but there was no way I could get even near it. Now I've shopped in this section before, I've gotten around easily, but not this time, and not because of the holiday. It was because construction and remodelling was underway and everything that was scrunched up together. Now I don't typically shop where it isn't accessible, but this struck me as a different and temporary situation.
There are many ways for a store to be accessible. I went to a clerk, who was on the phone to another department seeking information for the customers in front of me. When she'd answered their question and hung up the phone she turned to me. I explained that there was something I wanted but because construction made the area inaccessible I couldn't get to it.
She was out from behind that desk so quickly it was like she magically transported to the spot right beside me. We headed over and she brought me what I asked for and then when I said that I'd like to see a range of products matching the description, she went and got them for me and waited as I made my choices. I thanked her and she brushed away the thanks saying that it wasn't a 'problem to serve me.' I bought what I wanted and then headed to the next store.
Arriving there, I realized that I didn't have my glasses. I needed my glasses. I was stuck, I approached a young man and mentioned that there was something I wanted, that I knew the store had because I'd searched their inventory on line and I needed his help in finding it. He looked over to the area where I'd need to go and it was packed with shoppers. He offered me the choice to wait while he went to get it or for me to accompany him and we'd swim through the crowd. I chose to wait. He brought it, smiling, and told me that he'd grabbed the last one.
I thanked him. He too brushed it away. "I've only got a job because we've got customers," he said before heading off to help someone else.
I'm sure what happened today but every person I met today was accessible.
And, I liked it.
As it's the holidays it's no surprise that there are lots of things placed in the aisles but they were well spaced and I could easily navigate around them. This is a store where I've had several battles about placements of displays and I was cheered to see that they were there but they weren't in any way a hindrance.
But, as with many well made plans, it didn't go as I expected. The one section I really needed to go was completely impassable. I could see what I wanted but there was no way I could get even near it. Now I've shopped in this section before, I've gotten around easily, but not this time, and not because of the holiday. It was because construction and remodelling was underway and everything that was scrunched up together. Now I don't typically shop where it isn't accessible, but this struck me as a different and temporary situation.
There are many ways for a store to be accessible. I went to a clerk, who was on the phone to another department seeking information for the customers in front of me. When she'd answered their question and hung up the phone she turned to me. I explained that there was something I wanted but because construction made the area inaccessible I couldn't get to it.
She was out from behind that desk so quickly it was like she magically transported to the spot right beside me. We headed over and she brought me what I asked for and then when I said that I'd like to see a range of products matching the description, she went and got them for me and waited as I made my choices. I thanked her and she brushed away the thanks saying that it wasn't a 'problem to serve me.' I bought what I wanted and then headed to the next store.
Arriving there, I realized that I didn't have my glasses. I needed my glasses. I was stuck, I approached a young man and mentioned that there was something I wanted, that I knew the store had because I'd searched their inventory on line and I needed his help in finding it. He looked over to the area where I'd need to go and it was packed with shoppers. He offered me the choice to wait while he went to get it or for me to accompany him and we'd swim through the crowd. I chose to wait. He brought it, smiling, and told me that he'd grabbed the last one.
I thanked him. He too brushed it away. "I've only got a job because we've got customers," he said before heading off to help someone else.
I'm sure what happened today but every person I met today was accessible.
And, I liked it.
Sunday, November 27, 2016
Casual Cruelty
It's disconcerting.
The casual cruelty that people are capable of, the easy way that some have with hate, the dismissal of the idea that the feelings of others matter, sometimes takes me aback. I know that the anonymity of the keyboard and screen allow people to say things that they may never say aloud. I know that people hide behind made up names and dressed up personalities. I get all that.
But still.
In recent days I've seen a real upsurge in the use of the portmanteau "libt*rd" in comment sections, usually in a discussion gone acrimonious. It's no surprise that I despise the use of the 'r word' in any form in any place. It is such an offensive and cowardly word. Years ago the BBC did a survey of disabled people to discover the most derogatory word about disability and the 'r word' was top of the list. This means that people with disabilities as a community, as a whole community, stated clearly, 'this is a word that we all find hurtful.'
But it doesn't matter, does it, what disabled people say about our own lives, about our own experiences and about the oppression that we experience on a daily basis. Our voice isn't part of the discussion even of the subject of disability. Even so, we had the opportunity to speak and we did, this is the word, which when tossed, hits the vulnerable parts of our hearts and souls. No one may have been listening but that doesn't mean that what was said didn't matter.
The use of 't*rd' in combination with any other word, used to make up a new word in which the 't*rd' part is the ultimate insult isn't new. I know that. But the uptick in that particular word is noticeable and, by and large, of course, by some conservatives or conservative minded people. The people who stand with the church and with God. The people who talk about morals and scruples. The people who see everything as black and white. Those people are the people who seem so comfortable with spewing hatred. Those are the people who seem so comfortable mocking people who they hurt. Those are the people who love to victimize others and then say that their victims are victims of their own thin skin, their own sensibilities or their own self righteousness.
I don't think the idea that calling names is wrong is new to anyone.
Ruby and Sadie new that name calling was hurtful at a very early age.
No one had a talk with them about it, they just knew.
Like we all know.
So, let's be clear people using this portmanteau know what they are doing and are doing it purposefully. They intend offense, they intend insult and they intend hurt.
Who are these people?
We don't know of course because they don't use their names.
They dub themselves with a made up moniker intended to sound cool, or tough, or hard. And yet, they are in hiding, which is exactly the antithesis of cool, or tough, or hard.
And because they are in hiding I don't know who they are.
I actually want to know who they are. Not to identify them, not to chase after them - which would probably frighten them silly, but to get a sense of 'why?' I don't get 'why.'
It strikes me that I don't know a single person that uses that kind of language. But, I fear that maybe I do, that maybe the person clicking on their keyboard as I click on mine, might be in the line up in front of me, on the sidewalk beside me, in the movie theatre munching popcorn two rows over. Maybe I'm in the presence of people who find cruelty an easy option. Maybe I'm in the presence of hate without knowing it. Maybe the world is a little less safe than I thought it was.
I don't find it hard work to avoid name calling.
I don't find it difficult to use respectful language.
I don't find myself working up a sweat to control my tongue even when I've lost control of my temper.
I just don't.
Because, when I was very young, I learned, in many ways,that name calling hurts. And I don't want to be hurtful.
Isn't it that easy?
I had thought so.
But, I guess not.
The casual cruelty that people are capable of, the easy way that some have with hate, the dismissal of the idea that the feelings of others matter, sometimes takes me aback. I know that the anonymity of the keyboard and screen allow people to say things that they may never say aloud. I know that people hide behind made up names and dressed up personalities. I get all that.
But still.
In recent days I've seen a real upsurge in the use of the portmanteau "libt*rd" in comment sections, usually in a discussion gone acrimonious. It's no surprise that I despise the use of the 'r word' in any form in any place. It is such an offensive and cowardly word. Years ago the BBC did a survey of disabled people to discover the most derogatory word about disability and the 'r word' was top of the list. This means that people with disabilities as a community, as a whole community, stated clearly, 'this is a word that we all find hurtful.'
But it doesn't matter, does it, what disabled people say about our own lives, about our own experiences and about the oppression that we experience on a daily basis. Our voice isn't part of the discussion even of the subject of disability. Even so, we had the opportunity to speak and we did, this is the word, which when tossed, hits the vulnerable parts of our hearts and souls. No one may have been listening but that doesn't mean that what was said didn't matter.
The use of 't*rd' in combination with any other word, used to make up a new word in which the 't*rd' part is the ultimate insult isn't new. I know that. But the uptick in that particular word is noticeable and, by and large, of course, by some conservatives or conservative minded people. The people who stand with the church and with God. The people who talk about morals and scruples. The people who see everything as black and white. Those people are the people who seem so comfortable with spewing hatred. Those are the people who seem so comfortable mocking people who they hurt. Those are the people who love to victimize others and then say that their victims are victims of their own thin skin, their own sensibilities or their own self righteousness.
I don't think the idea that calling names is wrong is new to anyone.
Ruby and Sadie new that name calling was hurtful at a very early age.
No one had a talk with them about it, they just knew.
Like we all know.
So, let's be clear people using this portmanteau know what they are doing and are doing it purposefully. They intend offense, they intend insult and they intend hurt.
Who are these people?
We don't know of course because they don't use their names.
They dub themselves with a made up moniker intended to sound cool, or tough, or hard. And yet, they are in hiding, which is exactly the antithesis of cool, or tough, or hard.
And because they are in hiding I don't know who they are.
I actually want to know who they are. Not to identify them, not to chase after them - which would probably frighten them silly, but to get a sense of 'why?' I don't get 'why.'
It strikes me that I don't know a single person that uses that kind of language. But, I fear that maybe I do, that maybe the person clicking on their keyboard as I click on mine, might be in the line up in front of me, on the sidewalk beside me, in the movie theatre munching popcorn two rows over. Maybe I'm in the presence of people who find cruelty an easy option. Maybe I'm in the presence of hate without knowing it. Maybe the world is a little less safe than I thought it was.
I don't find it hard work to avoid name calling.
I don't find it difficult to use respectful language.
I don't find myself working up a sweat to control my tongue even when I've lost control of my temper.
I just don't.
Because, when I was very young, I learned, in many ways,that name calling hurts. And I don't want to be hurtful.
Isn't it that easy?
I had thought so.
But, I guess not.
Saturday, November 26, 2016
Rainbow Laces
This will not be a pleasant post.
I'm angry.
I read, today, about a 13 year old boy who committed suicide because of years and years of homophobic bullying. Most of his life he was tortured by social violence.
Bullying is social violence.
Understand that.
It's an act of violence that happens, rarely, in private.
It almost always has an audience.
Fuck.
I read, today, about some sports hero wearing rainbow laces to show solidarity with the LGBTI community. Yep, he got press. Yep, he got praise. Yep, what he did is nearly meaningless.
Like safety pins are nearly meaningless.
Like crosses around your neck on a chain are nearly meaningless.
Fuck.
I'm tired of symbols.
I'm tired of easy activism that is had with the click of a mouse.
So you like a post about racism.
So you re-post a poster about sexism.
So you write a comment denouncing homophobia.
Nearly fucking meaningless.
Rainbow laces won't save a boy from killing himself, at 13 fucking years old, because he'd been bullied because of his presumed sexuality for most of his life.
They won't.
They just fucking won't.
You know what will.
Someone stepping in and doing something.
Someone standing with him.
Someone sucking up the courage to take fucking action.
Enough with symbols, and likes, and re-posts. They are nearly meaningless. They are worse than meaningless, they make people feel like they've done something. They've taken a stand.
I said, 'nearly' meaningless, didn't I. Did you notice.
Because they are meaningful if they MEAN something. If they mean that because of that symbol you won't stand by as a group of teens surround a fat guy in a wheelchair taunting him with pig sounds. If they mean that you won't stand by when your own kids call something 'gay' as a pejorative. If they mean that you won't be silent when someone says 'but all lives matter.' If you won't DO SOME FUCKING THING.
Rainbow fucking laces.
Is a PRODUCT.
Safety pins.
Are a PRODUCT.
Crosses on chains.
Are a PRODUCT.
The word activist, when it's spoken begins with ACTIVE!
It's action.
Make those symbols mean something, make them mean action, make them mean that people who see them know you will not be silent. Make them mean that a 13 fucking year old kid will know they aren't alone, not because you are wearing them but because you are demonstrating, through bold action, that he is loved and valued and not fucking alone.
Not.
Fucking.
Alone.
A thirteen year old boy killed himself.
A story in a paper.
Appearing the same fucking day.
That some athlete dude ties his billion dollar shoes with rainbow laces.
And all I can do, when reading one story after the other, is fucking cry.
I'm angry.
I read, today, about a 13 year old boy who committed suicide because of years and years of homophobic bullying. Most of his life he was tortured by social violence.
Bullying is social violence.
Understand that.
It's an act of violence that happens, rarely, in private.
It almost always has an audience.
Fuck.
I read, today, about some sports hero wearing rainbow laces to show solidarity with the LGBTI community. Yep, he got press. Yep, he got praise. Yep, what he did is nearly meaningless.
Like safety pins are nearly meaningless.
Like crosses around your neck on a chain are nearly meaningless.
Fuck.
I'm tired of symbols.
I'm tired of easy activism that is had with the click of a mouse.
So you like a post about racism.
So you re-post a poster about sexism.
So you write a comment denouncing homophobia.
Nearly fucking meaningless.
Rainbow laces won't save a boy from killing himself, at 13 fucking years old, because he'd been bullied because of his presumed sexuality for most of his life.
They won't.
They just fucking won't.
You know what will.
Someone stepping in and doing something.
Someone standing with him.
Someone sucking up the courage to take fucking action.
Enough with symbols, and likes, and re-posts. They are nearly meaningless. They are worse than meaningless, they make people feel like they've done something. They've taken a stand.
I said, 'nearly' meaningless, didn't I. Did you notice.
Because they are meaningful if they MEAN something. If they mean that because of that symbol you won't stand by as a group of teens surround a fat guy in a wheelchair taunting him with pig sounds. If they mean that you won't stand by when your own kids call something 'gay' as a pejorative. If they mean that you won't be silent when someone says 'but all lives matter.' If you won't DO SOME FUCKING THING.
Rainbow fucking laces.
Is a PRODUCT.
Safety pins.
Are a PRODUCT.
Crosses on chains.
Are a PRODUCT.
The word activist, when it's spoken begins with ACTIVE!
It's action.
Make those symbols mean something, make them mean action, make them mean that people who see them know you will not be silent. Make them mean that a 13 fucking year old kid will know they aren't alone, not because you are wearing them but because you are demonstrating, through bold action, that he is loved and valued and not fucking alone.
Not.
Fucking.
Alone.
A thirteen year old boy killed himself.
A story in a paper.
Appearing the same fucking day.
That some athlete dude ties his billion dollar shoes with rainbow laces.
And all I can do, when reading one story after the other, is fucking cry.
Friday, November 25, 2016
What I Do
I was accused recently of being a snob.
This surprised me as I'm used to thinking of myself as amongst the snubbed. a Snubbee not a snubbor. But I need to be open to feedback so I asked what I had done that made me appear snobbish.
The answer, when I heard it, didn't really surprise me. I do do what I was accused of doing. The only thing is I do it for a different reason than the one being attributed to it.
So, here's what I do.
When I'm out and about, in my power chair or my manual chair, I don't look at people. I look mostly down towards the ground, catching others sort of waist to feet in my viewpoint. This isn't because I'm creepy it's because, as a wheelchair driver or a wheelchair pusher, I need to look down. I need to see the terrain I'm going over, I have to look for hazards and barriers and I need to see where my chair is in relationship to other people's legs. I don't want to smash into other people's bodies. So I look downish not upish.
But besides the mechanics of pushing or driving a chair I don't look at other people because I don't want to be subject to other people's reaction to me. I don't want to see the stares, the pointed fingers, the faces that people make to show disgust. I don't want to encounter any more of those than I have to, so I just don't look at people.
So put those two things together and that means that I don't greet people that I know when I'm out. I just push on, drive on past them. No cheery 'Hello,' no 'How's it going,' not even a 'Cold enough for you?'' None of those things, I just go by.
Because I want to be a safe driver.
And because the community is rarely safe for me, I need to make it as safe as possible.
I understood exactly how my behaviour might look.
So, I apologized.
And explained.
And then, of course, they apologized and explained.
It's amazing what a conversation will do.
This surprised me as I'm used to thinking of myself as amongst the snubbed. a Snubbee not a snubbor. But I need to be open to feedback so I asked what I had done that made me appear snobbish.
The answer, when I heard it, didn't really surprise me. I do do what I was accused of doing. The only thing is I do it for a different reason than the one being attributed to it.
So, here's what I do.
When I'm out and about, in my power chair or my manual chair, I don't look at people. I look mostly down towards the ground, catching others sort of waist to feet in my viewpoint. This isn't because I'm creepy it's because, as a wheelchair driver or a wheelchair pusher, I need to look down. I need to see the terrain I'm going over, I have to look for hazards and barriers and I need to see where my chair is in relationship to other people's legs. I don't want to smash into other people's bodies. So I look downish not upish.
But besides the mechanics of pushing or driving a chair I don't look at other people because I don't want to be subject to other people's reaction to me. I don't want to see the stares, the pointed fingers, the faces that people make to show disgust. I don't want to encounter any more of those than I have to, so I just don't look at people.
So put those two things together and that means that I don't greet people that I know when I'm out. I just push on, drive on past them. No cheery 'Hello,' no 'How's it going,' not even a 'Cold enough for you?'' None of those things, I just go by.
Because I want to be a safe driver.
And because the community is rarely safe for me, I need to make it as safe as possible.
I understood exactly how my behaviour might look.
So, I apologized.
And explained.
And then, of course, they apologized and explained.
It's amazing what a conversation will do.
Thursday, November 24, 2016
The Season Begins: What Christmas Means To One Mother and One Son
She greeted me with warmth when I got on the bus in the morning. I was a little surprised because I go to work fairly early and am picked up even earlier and when I ride with others at that time, they are, um, chatty. I'm a morning person so I returned her greeting and asked her how she was. She smiled and said that she was already having a nice day.
I got strapped in and we took off. We went by a series of trees decorated with Christmas lights and she asked me if I celebrated Christmas. I told her that I did and that I loved the season. She said she did too. We talked a little more and when I told her what I did for a living she told me that she had a son with an intellectual disability who lived in a group home in the city of Toronto.
"Oh, how he loves Christmas," she said, then paused and added, "and of course, then, so do I."
"What's his favourite part of the season," I asked. She looked at me, hard, and then sat back in silence. She fiddled with the controls on her power chair, it was as if she was deciding if she should answer my question.
I hadn't thought it a difficult question, what's hard about 'presents,' 'Christmas music,' 'decorations,' 'feasts' and all the rest of it all, including, of course, 'fancy Christmas crackers' and the cheap little crowns we wear as we eat like royalty.
She said quietly, "He likes the season because people are just a little nicer to him over the holidays, they pay him a little more attention and he gets to make a few more choices."
I sat stunned.
Then she said, "I want it to be Christmas for him year round."
We arrived at her drop spot and as she got off I said to her, "I wish you and your son a never ending Christmas."
"That would be nice," she said, "really nice."
People little nicer.
Getting a little more attention.
Every day a few more choices.
These are a few of his favourite things.
Mine too.
I got strapped in and we took off. We went by a series of trees decorated with Christmas lights and she asked me if I celebrated Christmas. I told her that I did and that I loved the season. She said she did too. We talked a little more and when I told her what I did for a living she told me that she had a son with an intellectual disability who lived in a group home in the city of Toronto.
"Oh, how he loves Christmas," she said, then paused and added, "and of course, then, so do I."
"What's his favourite part of the season," I asked. She looked at me, hard, and then sat back in silence. She fiddled with the controls on her power chair, it was as if she was deciding if she should answer my question.
I hadn't thought it a difficult question, what's hard about 'presents,' 'Christmas music,' 'decorations,' 'feasts' and all the rest of it all, including, of course, 'fancy Christmas crackers' and the cheap little crowns we wear as we eat like royalty.
She said quietly, "He likes the season because people are just a little nicer to him over the holidays, they pay him a little more attention and he gets to make a few more choices."
I sat stunned.
Then she said, "I want it to be Christmas for him year round."
We arrived at her drop spot and as she got off I said to her, "I wish you and your son a never ending Christmas."
"That would be nice," she said, "really nice."
People little nicer.
Getting a little more attention.
Every day a few more choices.
These are a few of his favourite things.
Mine too.
Wednesday, November 23, 2016
Ten Fingered Hands
A few days ago, I wrote a post about the natural assumption that people with disabilities live their lives alone. That disability equals isolation. I believe that part of the disphobia that people have is from a bone deep fear that if they became disabled they will not only deal with a new way of being in the world, they will deal with loss of family and friends and any social contact at all.
People can't simply, in my life anyway, see the relationships I have.
They see a lonely, probably pathetic, fat guy in a wheelchair.
I was at the hospital getting an iron top up which takes several hours. Several hours to get a vein. Several more hours to pump the stuff into me. Joe comes with me and waits with me a while and then I send him off to do what he needs to do and I read my book. We talk on the phone several times during the hours that I'm there. Then he comes back about a half hour before I'm done and we talk like couples talk about ordinary things: what are we going to have for supper, are we packed and ready for the next trip, were there any emails of importance. Stuff.
The nurse who was disconnecting me from the machine had met Joe, had seen him come with me and come back for me, had been there as we chatted, began telling me that some people get a bit dizzy from the infusion. She said it would be good to have someone with me for a couple of hours.
Then she said, as a statement, not a question, "So, you live alone."
Both of us were startled.
"No," I said, then pointing to Joe, "I live with him."
"Oh, really," she said with surprise in her voice.
The prejudice and stereotype regarding disability is so strong that people can't see anything but their preconceptions. Even when there is clear evidence that what they think about disability and people with disabilities is wrong, they still can't see us.
See us.
Really see us.
This is our challenge. Someone has stolen from us the right to have our own narrative, the right to have lives lived as individuals, the right to have a story that's different than the one that was crafted and created in different times by ten fingered hands.
People can't simply, in my life anyway, see the relationships I have.
They see a lonely, probably pathetic, fat guy in a wheelchair.
I was at the hospital getting an iron top up which takes several hours. Several hours to get a vein. Several more hours to pump the stuff into me. Joe comes with me and waits with me a while and then I send him off to do what he needs to do and I read my book. We talk on the phone several times during the hours that I'm there. Then he comes back about a half hour before I'm done and we talk like couples talk about ordinary things: what are we going to have for supper, are we packed and ready for the next trip, were there any emails of importance. Stuff.
The nurse who was disconnecting me from the machine had met Joe, had seen him come with me and come back for me, had been there as we chatted, began telling me that some people get a bit dizzy from the infusion. She said it would be good to have someone with me for a couple of hours.
Then she said, as a statement, not a question, "So, you live alone."
Both of us were startled.
"No," I said, then pointing to Joe, "I live with him."
"Oh, really," she said with surprise in her voice.
The prejudice and stereotype regarding disability is so strong that people can't see anything but their preconceptions. Even when there is clear evidence that what they think about disability and people with disabilities is wrong, they still can't see us.
See us.
Really see us.
This is our challenge. Someone has stolen from us the right to have our own narrative, the right to have lives lived as individuals, the right to have a story that's different than the one that was crafted and created in different times by ten fingered hands.
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