And suddenly a door opened and I was surrounded by children. Small children. Young enough to be curious. Young enough to have flexible minds. Young enough to see I was different. Young enough to connect with my eyes and see similarity.
The questions flew out of them. They had to fly by the discomfort of adults who worried about me, as if they thought the questions would somehow lead me to guess that I was different and be hurt by that. But the words flew quickly by objections.
"Why are you sitting on wheels?"
"Because I can't walk very well."
That answer simply satisfied.
"Is it hard to get around?"
"Sometimes, but it's really fun going downhill."
That made them smile as they imagined the scene.
"Does it hurt?" came a quiet question from the smallest child.
"It doesn't hurt to be in a wheelchair but sometimes it hurts when people stare."
She nodded. The reality of bullying starts very early.
Then, they flew away. Some waving, some calling 'bye'. Some just taking off home.
It was so nice to have a conversation about my disability and my wheelchair with people, many forget that children are 'people', who haven't already decided what the answer is, or should be.
Open minds.
Open hearts.
That's always the best way to enter into conversation, isn't it?
Tuesday, May 14, 2019
Friday, May 10, 2019
Words / Power / Healing
For about 12 years now, I've had a tiny little hole in my mind that led to a puncture in my heart and a crack in my soul. It's a wound that sometimes hurt. But only sometimes. There were days it was almost unbearable and days I didn't think about it at all. I had become resigned to the emptiness of those spaces in the trinity of my essence. Resigned. I didn't talk about it with anyone, except Joe, I didn't want people to know about the missing spaces of me, because then they'd know the cause, the blow that put that tiny hole in my mind.
Then, today, something happened.
Someone spoke to me. Someone I liked but didn't know well. And they said eleven words to me in context of talking about something I'd done. Just eleven words. I never thought I'd hear them. Those words traveled to that tiny hole in my mind and made their way to the puncture in my heart and the crack in my soul. In seconds the emptiness was gone.
Words are powerful things.
They are also shaped to fit into our lives and our consciousness in deeply intimate ways.
I imagine there are millions of people, like me, who had given up on waiting to hear the words they need to hear. To experience those words entering into their very selves and healing wounds left by callous or indifferent hands.
I'm a little bit changed.
Part of me, the part that would have me on edge for no particular reason, seems to have mellowed. I feel it already.
I'm completely changed.
My mind, my heart, my soul, feel differently, like they fit me a little bit better.
Those words.
Eleven of them.
Were magic.
I hope that any reading this who get what I'm saying, I'm sure it sounds like nonsense to some, I hope that you too will one day soon hear the words you need to hear.
And experience.
Healing
Then, today, something happened.
Someone spoke to me. Someone I liked but didn't know well. And they said eleven words to me in context of talking about something I'd done. Just eleven words. I never thought I'd hear them. Those words traveled to that tiny hole in my mind and made their way to the puncture in my heart and the crack in my soul. In seconds the emptiness was gone.
Words are powerful things.
They are also shaped to fit into our lives and our consciousness in deeply intimate ways.
I imagine there are millions of people, like me, who had given up on waiting to hear the words they need to hear. To experience those words entering into their very selves and healing wounds left by callous or indifferent hands.
I'm a little bit changed.
Part of me, the part that would have me on edge for no particular reason, seems to have mellowed. I feel it already.
I'm completely changed.
My mind, my heart, my soul, feel differently, like they fit me a little bit better.
Those words.
Eleven of them.
Were magic.
I hope that any reading this who get what I'm saying, I'm sure it sounds like nonsense to some, I hope that you too will one day soon hear the words you need to hear.
And experience.
Healing
Thursday, May 09, 2019
No Toast
There's lots of ways ...
Today I was getting ready to start work when Joe brought me breakfast. Now, before I go, on, please understand that I really appreciate him doing this and what I'm about to say doesn't take away from that. Anyway he brought me my breakfast and when I looked down there were the two eggs, some veggies sausages but no toast. I eat eggs on toast every morning of my life. I said, "There's no toast!" Joe immediately apologized and I interrupted him to say, "Is this your way of calling me fat?"
I said this as a joke.
I still mean it as a joke.
Joe is a wonderful man, he is neither a bully or a name-caller.
BUT ...
It got me thinking about ...
... the time that I heard a staff, impatient, snap at a young boy with Down Syndrome, who was attempting, unsuccessfully, to put on his shoes. This is a skill he has but it's always done slowly and if there are any distractions, he needs to start again. The staff said, shortly, "Let me just do it," and took the shoe from the boy's hands and shoved them on his feet.
... isn't that just another way of calling someone the 'r-word?'
... and the time I was in a store, shopping, and two young black teenagers came into the place. They were immediately followed by the security officers, who had ignored me and, unsurprisingly all the other white shoppers. The girls knew that they had been followed and were under scrutiny that was zeroed in on just them.
... isn't that just another way of calling someone the 'n-word?'
... and finally the time when I was at a meeting and the chair of the meeting called on men who raised their hands more than twice as many times as he called a on women who had similarly indicated a desire to speak. They pretended not to mind and the chair pretended that he treated people equally.
... isn't that just another way of calling someone the 'b-word?'
Maybe name calling isn't limited to speech, maybe the most serious way we denigrate someone is with the words we speak through our behaviour. It is said that behaviour is communication and if it is, some of us need to shut up.
Or, even better, learn a new vocabulary.
Today I was getting ready to start work when Joe brought me breakfast. Now, before I go, on, please understand that I really appreciate him doing this and what I'm about to say doesn't take away from that. Anyway he brought me my breakfast and when I looked down there were the two eggs, some veggies sausages but no toast. I eat eggs on toast every morning of my life. I said, "There's no toast!" Joe immediately apologized and I interrupted him to say, "Is this your way of calling me fat?"
I said this as a joke.
I still mean it as a joke.
Joe is a wonderful man, he is neither a bully or a name-caller.
BUT ...
It got me thinking about ...
... the time that I heard a staff, impatient, snap at a young boy with Down Syndrome, who was attempting, unsuccessfully, to put on his shoes. This is a skill he has but it's always done slowly and if there are any distractions, he needs to start again. The staff said, shortly, "Let me just do it," and took the shoe from the boy's hands and shoved them on his feet.
... isn't that just another way of calling someone the 'r-word?'
... and the time I was in a store, shopping, and two young black teenagers came into the place. They were immediately followed by the security officers, who had ignored me and, unsurprisingly all the other white shoppers. The girls knew that they had been followed and were under scrutiny that was zeroed in on just them.
... isn't that just another way of calling someone the 'n-word?'
... and finally the time when I was at a meeting and the chair of the meeting called on men who raised their hands more than twice as many times as he called a on women who had similarly indicated a desire to speak. They pretended not to mind and the chair pretended that he treated people equally.
... isn't that just another way of calling someone the 'b-word?'
Maybe name calling isn't limited to speech, maybe the most serious way we denigrate someone is with the words we speak through our behaviour. It is said that behaviour is communication and if it is, some of us need to shut up.
Or, even better, learn a new vocabulary.
Wednesday, May 08, 2019
Not So Much
I saw them at the mall.
So did everyone else.
He was tall and strong. His tight tee shirt emphasized his lean, strong, torso. He obviously took care of himself, he obviously thought that mattered. He obviously wanted others to notice. His tight tee, stretched across his muscular chest and his arms bulging against the restraint of his shirt, told us that.
Beside him and a little behind.
Walked a man with a disability.
Physical and intellectual disabilities in fact. He walked in such a way that his knees constantly got in each other's way. But with will and determination he was fighting to keep up with his staff. Unlike his staff he did not wear a tight tee shirt, he wore, instead, a bulky coat and jeans. He was sweating with the effort of keeping up with a staff who walked just a little bit too fast.
He was on his phone.
The whole time I saw them.
Never looking up.
Never looking back.
Not once did he speak to the man with him - the man behind him.
The man walking behind him.
The man struggling to keep up.
At one point he laughs at something he sees on his phone.
He is connected. He is wired in to his friends. He has a life beyond where he is now, a life different from what he's doing now. It's clear that his world is much bigger than this place. It's clear that those relationships are much more important than the man, walking a little too fast, sweating with the effort, who walked behind him.
He looked so alone.
Walking quickly behind a man in a tight tee.
He looked so lost.
Following steps taken too quickly.
Everyone watching had a choice in what they thought about what they saw. Did they see a staff who didn't care. Or did they see a man not worth caring about? That this is a legitimate question frightens me, but I know it is.
He cares about himself, he shows that. His body is toned and there's a gym somewhere who's equipment is being worn out by this man. I guess he think that's important.
His body is strong.
His heart, not so much.
Not so much at all.
So did everyone else.
He was tall and strong. His tight tee shirt emphasized his lean, strong, torso. He obviously took care of himself, he obviously thought that mattered. He obviously wanted others to notice. His tight tee, stretched across his muscular chest and his arms bulging against the restraint of his shirt, told us that.
Beside him and a little behind.
Walked a man with a disability.
Physical and intellectual disabilities in fact. He walked in such a way that his knees constantly got in each other's way. But with will and determination he was fighting to keep up with his staff. Unlike his staff he did not wear a tight tee shirt, he wore, instead, a bulky coat and jeans. He was sweating with the effort of keeping up with a staff who walked just a little bit too fast.
He was on his phone.
The whole time I saw them.
Never looking up.
Never looking back.
Not once did he speak to the man with him - the man behind him.
The man walking behind him.
The man struggling to keep up.
At one point he laughs at something he sees on his phone.
He is connected. He is wired in to his friends. He has a life beyond where he is now, a life different from what he's doing now. It's clear that his world is much bigger than this place. It's clear that those relationships are much more important than the man, walking a little too fast, sweating with the effort, who walked behind him.
He looked so alone.
Walking quickly behind a man in a tight tee.
He looked so lost.
Following steps taken too quickly.
Everyone watching had a choice in what they thought about what they saw. Did they see a staff who didn't care. Or did they see a man not worth caring about? That this is a legitimate question frightens me, but I know it is.
He cares about himself, he shows that. His body is toned and there's a gym somewhere who's equipment is being worn out by this man. I guess he think that's important.
His body is strong.
His heart, not so much.
Not so much at all.
Tuesday, May 07, 2019
Maybe
I sat waiting, for a long time, outside the accessible toilet. The green light had indicated that it was in use and I had tested the door to see if it was locked. It was. Time passes slowly when you are desperate to pee. When the door opens, a couple stumbles out. They do not have an obvious disability and this makes them both talk quickly, telling the same story. She had been in a car accident recently and now has seizures. He supports her when they happen, he loves her, he'll do anything for her. They both tell me this in a weirdly parallel but wildly different dialogue. They needed the space for her to get changed and to get fully back into herself. They were really sorry it took so long, they knew that I'd been waiting.
Here's the thing. I didn't care about waiting. I don't like it, but I am, and this may surprise you, aware that I'm not the only person with needs in this world. They were finally through the door and the fellow leans over to hold the door open. He's reaching as far as he can, the door is heavy, it's a struggle for him to do this. And he doesn't need to. I'm right beside the door opener button. I tell him it's okay as I reach for the button.
"No," he said, "I want to help you. Nobody ever helps us. No one wants to put the work in to understand us. When we came out and saw you I thought you'd be angry and you weren't you understand what we are going through. That's help. That's big help. I want to help you back."
Mostly when people hold doors that door openers open, it annoys me a little bit but this time I just said 'thanks, I appreciate it.'
He smiled at me, She smiled at me. It was like we were all having a moment outside a bathroom door.
I had never thought that 'not being mad' was an act of understanding.
But maybe it is.
Maybe it is.
Here's the thing. I didn't care about waiting. I don't like it, but I am, and this may surprise you, aware that I'm not the only person with needs in this world. They were finally through the door and the fellow leans over to hold the door open. He's reaching as far as he can, the door is heavy, it's a struggle for him to do this. And he doesn't need to. I'm right beside the door opener button. I tell him it's okay as I reach for the button.
"No," he said, "I want to help you. Nobody ever helps us. No one wants to put the work in to understand us. When we came out and saw you I thought you'd be angry and you weren't you understand what we are going through. That's help. That's big help. I want to help you back."
Mostly when people hold doors that door openers open, it annoys me a little bit but this time I just said 'thanks, I appreciate it.'
He smiled at me, She smiled at me. It was like we were all having a moment outside a bathroom door.
I had never thought that 'not being mad' was an act of understanding.
But maybe it is.
Maybe it is.
Saturday, May 04, 2019
Back
I'm back.
When I fell ill we had several trips booked, airplane tickets bought, hotel rooms sorted. We have never been so organized. It felt good, until Joe, while I lay in a hospital bed, had to cancel everything. It was brutal. So I've not been working at anything but my regular full time job for several months now. It's been good to get a rest but difficult to feel good about.
But.
I kept my most recent gig. It was to work with self advocates as they came together to form a self advocacy group. I love this kind of work. I really wanted to be able to do it.
We arrived early and got set up. Joe and I went over our roles and then we waited for the participants to arrive. And when they did, I turned to Joe and said, "This is going to be fun!"
And it was.
The group had energy, it had ideas - and really big ones, they were not afraid to take a stance or to direct me. After one of the items that was brought up, I thought to myself, "This is really deep shit!" I wanted to say that to them, to acknowledge the depth of thought involved in their discussion.
So I said, "Does anyone here mind if I swear?" Now I personally think that 'shit' is one of the stinkiest things but also one of the blandest swear words. But I asked. Three or four people in the group looked at me and without hesitation said, "No, don't swear."
And I didn't.
Because that's what self advocacy is, speaking up and letting people know what boundaries they don't want crossed, what language they don't want used ...
I think this group has a really good chance of doing really big things.
Gratitude isn't a big enough word for me to express my happiness at being able to be there, to be part of this, and to make it through the day feeling good and strong.
I'm back.
When I fell ill we had several trips booked, airplane tickets bought, hotel rooms sorted. We have never been so organized. It felt good, until Joe, while I lay in a hospital bed, had to cancel everything. It was brutal. So I've not been working at anything but my regular full time job for several months now. It's been good to get a rest but difficult to feel good about.
But.
I kept my most recent gig. It was to work with self advocates as they came together to form a self advocacy group. I love this kind of work. I really wanted to be able to do it.
We arrived early and got set up. Joe and I went over our roles and then we waited for the participants to arrive. And when they did, I turned to Joe and said, "This is going to be fun!"
And it was.
The group had energy, it had ideas - and really big ones, they were not afraid to take a stance or to direct me. After one of the items that was brought up, I thought to myself, "This is really deep shit!" I wanted to say that to them, to acknowledge the depth of thought involved in their discussion.
So I said, "Does anyone here mind if I swear?" Now I personally think that 'shit' is one of the stinkiest things but also one of the blandest swear words. But I asked. Three or four people in the group looked at me and without hesitation said, "No, don't swear."
And I didn't.
Because that's what self advocacy is, speaking up and letting people know what boundaries they don't want crossed, what language they don't want used ...
I think this group has a really good chance of doing really big things.
Gratitude isn't a big enough word for me to express my happiness at being able to be there, to be part of this, and to make it through the day feeling good and strong.
I'm back.
Thursday, May 02, 2019
Good Thing or Bad Thing
I had just gotten myself positioned at the cable machine to do punches, straight ahead, upwards, downwards. I'd increased the weights and had tried a couple of punches to see how I'd do, it was doable but work. I'd been so focused that I didn't notice him standing there, waiting for me to notice him. I stopped, looked up at him and said hello.
He mentioned that it was nice to see me back and wondered where I'd been over the last many weeks. I told him that I'd been very sick and in the hospital and was only now trying to get back to the routine, I had, I emphasized, been to the gym a couple of times since but had not seen him there.
He asked about my illness and recovery and we spoke for a few minutes. I told him that the worst thing about the gym was, when you came back, you could tell exactly how much strength you'd lost. I'd had to drop weights and resistance on everything I was doing. It would take a while to get it all back.
"You are an inspiration," he said.
I blubbered something about not feeling like one.
"Well, you are," he said and then was on his way.
I tried to figure out why I wasn't offended. Like all of you I don't like inspiration porn, or being objectified into a one dimensional disabled wonder. Then I realized that he wasn't using the word in relationship to my disability but in regards to my will to fight back after an illness. I don't know what his history is, or where he comes from, or who he's known, I don't know what the word 'inspiration' means in his own personal vocabulary.
I am inspired by people sometimes but have become shy of saying the word. But inspiration isn't a bad thing, inspiring people do actually exist.
It's weird because it took me 20 minutes to figure out that I wasn't offended and another 10 to figure out that it was a compliment.
Being disabled means that sometimes I complicate the uncomplicated and over think something that doesn't require any thought at all.
Any of you find yourselves spending too much time figuring out what's the right was to feel about things?
He mentioned that it was nice to see me back and wondered where I'd been over the last many weeks. I told him that I'd been very sick and in the hospital and was only now trying to get back to the routine, I had, I emphasized, been to the gym a couple of times since but had not seen him there.
He asked about my illness and recovery and we spoke for a few minutes. I told him that the worst thing about the gym was, when you came back, you could tell exactly how much strength you'd lost. I'd had to drop weights and resistance on everything I was doing. It would take a while to get it all back.
"You are an inspiration," he said.
I blubbered something about not feeling like one.
"Well, you are," he said and then was on his way.
I tried to figure out why I wasn't offended. Like all of you I don't like inspiration porn, or being objectified into a one dimensional disabled wonder. Then I realized that he wasn't using the word in relationship to my disability but in regards to my will to fight back after an illness. I don't know what his history is, or where he comes from, or who he's known, I don't know what the word 'inspiration' means in his own personal vocabulary.
I am inspired by people sometimes but have become shy of saying the word. But inspiration isn't a bad thing, inspiring people do actually exist.
It's weird because it took me 20 minutes to figure out that I wasn't offended and another 10 to figure out that it was a compliment.
Being disabled means that sometimes I complicate the uncomplicated and over think something that doesn't require any thought at all.
Any of you find yourselves spending too much time figuring out what's the right was to feel about things?
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