Sunday, April 23, 2017

A Letter To Someone Who Will Never Read It

To The Handsome Young Man at the Movie Theatre,

I know what you saw.

Of course I do.

I have lived in my body and 'the community' for a very long time. I have seen myself reflected in the glass of the mirror and reflected in the eyes of those, like you, repulsed by me. So, yes, I know what you saw. 

You saw my body.

You saw my chair.

You saw my age.

But, of course, I know what you didn't see. You didn't see anything that even a warm greeting would have elicited. You wouldn't have heard the warmth in my voice as I responded to a casual hello, because, of course, you didn't offer one. Instead you offered me your face.

You probably know you are handsome. At 18 or 19, you have a good solid set of shoulders, you have blond hair dusted with bits of gold, you have the bluest eyes. I know you know that too. You will have seen it in the mirror, you will have seen your likeness reflected in the eyes of people, even strangers, who admire how you cut your way through air.

But, your face, when it shows judgement, when it curls into a sneer of superiority, when it sets hatred in concrete, is ugly.

Really, really, ugly.

I wonder if you know that.

I imagine you spend time in the mirror smiling at what smiles back. I imagine you check, maybe with some panic, for flaws and are pleased with finding none, or none that really matter. You probably have never seen the face that you showed me.

All I was doing was coming out of a door that you wanted to come through. You had to wait a second, just a second, but that was too much for the likes of me. People like me can't expect, of people like you, manners, or courtesy or decency. We are too low in your estimation. 

You made it clear who you thought you were and who you thought I was.

I am what you saw. but I am more than that.

I have a heart that loves and a heart that feels and a heart that can be generous.

But you forget, in your moment of superiority, that I see you too. But you don't think about that. You don't think about that face of yours, you don't concern yourself with the angularity of your movements when angry, you don't think of that fact that while you cannot, at that moment, see inside of me, I can see inside of you.

I am more that what you saw.

I hope, I really hope, that there is more of you than what I saw.

And yes.

You should worry about that.

Saturday, April 22, 2017

Even Us

It took some work but we managed to replace the footrest on my chair. We found a company, Reliable Medical Supply who were able to assist us quickly, easily, and without fuss. I rode out of the building, the new footrest on and I felt completely restored. I'd ridden around pushing and holding my one leg up at the same time for a couple days and as a result had pulled muscles in my back and tired those in my leg. I had to ask Joe to push me a couple of times, but only when, on break, I had to get to the bathroom quickly.

At the end of the day we went to a very large grocery store that, miraculously, wasn't busy. I set to doing a very long push, up and down every aisle and back and forth across the store. I needed to exercise but I also needed to feel in control again. It was great. I knew I'd done a long distance, I had tired myself out, and I knew sleep would come easily.

There was a moment though that I wanted to tell you about. We've forgotten our blue badge so we can't park in wheelchair parking. It had been raining so Joe let me off at the door and, though there was quite a up slope into the store, I knew that I could do it easily. I was pushing up when a customer coming in ran at me, arms out, ready to inflict help upon me. I didn't see her coming.

I did hear a voice saying, "Don't, he didn't ask!" When I got to the top I looked back to see a young woman with Down Syndrome, standing watching me. She stayed and waited until I was up the slope and in the store. I thanked her.

She said, "I hate it when people just help me. It's just another way to call me stupid and helpless." I told her that she was right. I didn't like the message behind unasked for help.

Ban the 'R' word in speech and in action.

Ban the helpless image in speech and in action.

Speak with respect, act with respect, it's all that anyone really wants.

Even us.

Especially us.

Friday, April 21, 2017

Urine, My Post and A Comment

Yesterday I posted something I thought very funny on Facebook. I had been rolling around in the pharmacy department of the grocery store where we were shopping and I noticed, for no reason at all, that they had a huge selection of men's incontinence wear. I  really surprised that, at my size, they had some that would fit me. Hell, I have to go to to big and tall store to buy clothes and here were incontinence briefs in my size. I joked with Joe that now I could relax and grow old. We both laughed. I that I was going to put this on my Facebook page.

And I did.


Oh happy day!
I was rolling around a pharmacy and discovered that they have men's incontinence products in my size. I can relax and grow old.

Immediately people began responding, I was gathering a lot of 'likes' and a lot of smiley faces. I was glad because I thought it funny too. The someone responded saying that they were surprised at my post and asked if I was making fun of people like her son who, because of his disability is incontinent and doesn't find it funny.

My first response was a little bit of annoyance, let's be honest here, because, to me, obviously I was making fun of me, my size and my age. It was just a joke. A few seconds later, I can't think while annoyed, I clearly saw her point. I didn't have time to do anything other than delete the post. It wasn't a hard decision for me. I hadn't thought through what I'd written and what it could mean to others. My bad.

Then I received several messages saying I shouldn't have taken it down, that it was funny, that in this case it was obvious what I was joking about, that people are too sensitive, that I shouldn't censor myself because of the sensitivities of others.

It was the last one that got me, I shouldn't censor myself because of the sensitivities of others. That's the one that made me glad I had done what I had done. Because of course I should. I don't want my writing or my speaking to cause unnecessary pain or distress to people. I want to challenge people, that's my job, but when a joke, which has no meaning other than to be a joke, is one that could easily be interpreted as making fun of others, in this case, others who wear incontinence products, I am compelled to delete it. Of course I am. Moreover, I'm glad she came on and had the courage to challenge me.

Dialogue isn't to convince others you are right.

Dialogue exists so that both parties learn, both parties grow, both parties end up examining their points of view.

I hope people continue to take me on and say, 'hey, do you hear what you are saying' ... I am old enough now not to be threatened by the idea that I'm not always right. That I get things wrong. That I don't always think things through.

It doesn't matter that I wasn't meaning to cause hurt or offense, what matters is that I did.

So, it's a simple solution.

Take it down.

It's important to say that I've had people rant at me (and no ranting happened in this situation) about taking down posts wherein I speak of people with disabilities having voice and choice and adult goals and dreams. I examine the posts and if I still believe that what I said is accurate and important, I don't make the change.

This wasn't that.

And because this wasn't that, I took the post down.

Because that's the right thing to do.

Thursday, April 20, 2017

Again

I am again facing wheelchair problems. After arriving yesterday we decided to go out for lunch. Got out of the car and into the chair and SNAP my footrest broke off. This happens often enough to be tedious and it meant that we had to go into the restaurant and then do some shopping with me pushing while holding up one leg.

This is hard.

The good thing is my fitness level has changed since last a footrest broke and I was able to push fairly far and fairly fast even under these conditions, but, it needs to be fixed quickly. Have found a place to replace it and will get a new set tomorrow.

We were lucky this happened after getting through the airport and into a rental car and to the hotel. The big stuff was done. We were also lucky that I had the ability to manage with it fairly well today but that's where the luck ends.

This is a trip where I decided to challenge myself. I'm doing three brand new lectures, one of them a full day workshop. I didn't need to have the additional challenge of wheelchair problems along the way. But things happen when they happen and we deal because we have to deal.

Tomorrow my chair should be back in business.

I'm hoping that the universe understands, that, I'm not in need of any more lessons for a little while.

Wednesday, April 19, 2017

A Third Option

We arrived at the airport and I pushed myself to the check in area. There I was spotted by a woman, an employee, who came over to ask me if I needed to go to special services to get me to the gate, then she looked at Joe and said, "Or, will you be taking him?" I said, archly, "There is a third option, I can take myself there." She looked flustered and trying not to slip into annoyance, "I suppose."

Now, I'm not quibbling with her pointing out where special services was, I know where it is, I'm a frequent flyer, but many wouldn't. I was just annoyed that my ability to get myself where I was going was simply discounted as an option. I'm disabled. I must need help. That is the natural order of things.

Now, there isn't anything wrong with needing help or asking for help. What's wrong is the assumption that, of course you need it. It would only have taken her a few more words to make the interaction respectful rather than disrespectful.

The option of independence.

The idea of self reliance.

The possibility of competence.

The lowering of expectations for people with disabilities is a killer. It kills the will to try. It kills the push to push. It kills the desire to dig deeper wells.

More, there is a real need to please those who need to be pleased. Her annoyance, while hidden as well as she could. was real.

Later that same day Joe and I were going out a door. A clerk who worked there dashed to the door saying that they'd hold the door for us. Joe was already through and holding the door. I said, "It's okay, we've got this."

We heard a loud exasperated sigh, then, "You mean I'm not needed?" It was said as a joke. But it wasn't a joke.

I see so many people with intellectual disabilities who bow under the weight of others needs to be needed. I see so many who live limited lives because of limitations set by others. Tragic.

Meaning well isn't okay if doing harm is the result.

When I say, "I've got this."

Trust me.

I do.


Tuesday, April 18, 2017

Being Nice: Part 3

I know I will, throughout my day, need help unexpectedly. I will drop something under my desk. I will need something carted from my office to the board room, and back. Any of a thousand different things could happen where I would need to ask someone for help. A thousand different things that non-disabled people would not need help to do. Luckily for me it doesn't happen a lot, but in order to say that I've had to redefine 'a lot'. Once or twice daily, isn't a lot is it?

My strategy was to go to the 'designated kind person' route. I spoke to a couple of people at work who I really thought wouldn't mind. It was hard doing this because I can't think of a single person at work who would mind. Most probably I went with people I felt comfortable asking for help. I chose well, they agreed without question. That's when I really kind of discovered that once or twice daily may be a little closer to 'a lot' thank I'm good with.

Even so, I went with this system. Even if there was someone else I could ask, I'd wait for my designated kind person to come by, or I'd call for them. They were always good about it. But I noticed that those who were closer, or those of whom it would have been more natural to ask for help, seemed to wonder why they had been excluded from the request.

I had been exploiting the kindness of a couple people because of my discomfort in asking other people. I laid it all on them. I know, I know, I know, it didn't bother them and, in fact, they seemed to enjoy helping out, but that didn't matter. It wasn't their help I was using, I was using them to avoid asking others. I was using them when I didn't need to ... a kind of exploitation of their niceness.

Well, a couple weeks ago I stopped doing that. Nice does not mean, up for exploitation. Nice does not mean being on an exclusive list to be helpful. Nice does not mean 'use me'.

So, as I joke about this, "I spread the joy around." I was right, everyone at the office is nice about it. No one minds giving a quick hand. And two people are no longer on the hook for my every single need, it's shared around by who's around. It was hard for me to start asking others, there's a vulnerability in acknowledging need and accepting help, but I needed to do something to ensure that someone's niceness doesn't land them the responsibility of meeting every single need for help that I have.

Nice has boundaries.

Nice should never be exploited. (even by me)

Nice should always have the ability to say, 'No'. (even to me)

Monday, April 17, 2017

That's Nice (Part Two Of A Series)

She's starving.

Her staff can see that somethings wrong, but she won't talk about it. She needs little support, she can manage her own money, she can shop and cook nutritious meals, she is well liked in the building in which she lives. When staff visits, she's strict about her privacy. They can come in for tea, but they are not allowed in her kitchen or her bedroom. She had always before enjoyed the staff's visits, because she got lonely and liked the chance to chat about ordinary, every day things that were going on in her life.

But now, she just wants them to leave right away.

Finally, when she's too weak to resist, they get her to her doctor's office. She's extremely malnourished. The staff find out that she hasn't eaten a real meal in weeks. She has no food in her home. Nothing.

She is hospitalized for a few days. Her state of health has been seriously compromised. At first she didn't want to talk about her kitchen, the lack of food, and the reason she hadn't eaten. But finally she said that she didn't have any money because she was helping out her friends.

They were nice to her.

She wanted to be nice back.

So when they asked if they could borrow some money, they always seemed to know when she had any, she gave. She gave until she bled. Once when she tried to hold back some money, to get groceries, her best 'friend' asked her not to be mean and joked that she could stand to lose some weight anyways. She handed the money over, her friend said she needed it for rent.

As they tried to talk to her about it, she kept saying the same thing.

They are nice to me.

I need to be nice to them too.

I like to help out.

I was taught to be nice to everyone.

They won't be nice to me if I'm not nice to them.

If they get mad at me I won't have any friends.

I'm a nice person, I help people out.

Nice.

Nice isn't subservience.

Nice isn't manipulation.

Nice has boundaries.

"No," doesn't erase "Nice."

Staff had never noticed, on their visits, that she was lonely, because at the moment of their visits with her, she wasn't lonely. They felt good about the visits because she appreciated them. They got into the habit of visiting her, of being on a social call, that they forgot the had a job to do. They never asked why their visits mattered so much when she needed no assistance from them at all. They never spotted her loneliness and therefore never realized the vulnerability that comes with  it.

They knew that she took pride in being nice. They knew that she 'would give the shirt off her back' and spoke of her in those terms. They didn't realize that it's just a saying, it's not a way to live one's life. They didn't think of the vulnerability that comes with the compulsion to be 'nice' to be seen as 'nice' and to respond always in a manner consistent with the popular conception of nice.

I'm not staff blaming here. I'm really not. Until the fact that she was starving started to show, there were no real signs for the staff to be concerned about. No one teaches people with disabilities of the true social dangers of the community, true. But no one teaches staff about the fact that people with visible intellectual disabilities have a target on their back and need a different kind of support when living independently in the community. Inclusion has sharp edges, but no one ever spoke to the staff about them and no one taught her how to avoid them.

We have taught people with disabilities ...

to be compliant

to be helpful

to be nice.

We have taught people with disabilities to make themselves vulnerable to others. And to themselves.

Nice has boundaries.

"No" doesn't erase "Nice."

There's work to be done here.

Her doctor said, "She could have died."

Nice and the drive to be nice can be a bullet aimed at the heart.