Freedom Fries

We were getting breakfast at McDonalds, the line up for the drive through windows was tightly packed and long. In the restaurant, it was equally busy, but it became evident that we'd walked in on a real community of people. It seemed that everyone knew everyone and that everyone was glad to see everyone there. Four men with intellectual disabilities were part of the mix. Two sat together, two others were in line up. All we simply another part of the group being treated with the same kind of laughing, joshing, camaraderie that filled the place. My appearance didn't cause even a ripple in the social waters of the place. I'm guessing that once the first stone of difference had been tossed in, all others lost their ability to cause waves.

One of the men had a very loud voice when he ordered his breakfast. He loudly ordered, "Pie and fries." He was asked what kind of pie, and he said, "I don't care, just give me the bigger one!" People laughed, he got served, the line moved on.

Pie and fries.

FREEDOM!!!!

Freedom is felt in so many ways.

I'll bet that for most of his life he would have had people paid a lot of money to sift through his decisions, people who would have weighed out every choice, people who would have given the final word on if his decision was valid, if his choice appropriate.

People that, right now ... at the echo of 'pies and fries' are slumped over their desks crying.

Pies and fries.

We wanted people with disabilities to live in and be part of the community ... CHECK!!

We wanted people with disabilities to live independently feeling confident in their own skin ... CHECK!!

We fought for people with disabilities to have the right to make choices ... CHECK!!

I know that there will be those who will now Google the nutritional analysis of 'pies and fries' in order to be able to count calories ...

Could you maybe wait for a minute for him to count his blessings.

Freedom!

Freedom Fries ... Freedom pies!

I Think I Got it Wrong

Sometimes ... well, just sometimes ...

I was picking up a couple bottles of flavoured water in the store. This brand claimed to use natural, organic, flavouring but that wasn't their major selling point. They were the cheapest - the store brand in fact. I had loaded a couple into my bag and was looking over the shelf to decide on another flavour. A woman came over, asked very nicely, if she could reach something for me. I told her, genuinely that it was a nice offer but that I was fine. "You sure, now?" she asked. I said that I was. She smiled and headed off.

The bottle I had decided on was a little higher but I have a long reach. I wondered if I should have let her help me. Sometimes I get the feeling that my allowing them to give to me is a way for me to give to them. I know. I know. I know everything that's wrong with that. Because I get intrusive help and angry responses at refusals I am wary of any offer at all. However, I turned her down because I really could do it.

I understand this because there are some times where the best thing that Joe can do to help me is to let me help him. He does so much for me, things I can't do anymore, that there are times that I feel that i want to give back. The same is true in the world ... I want to give back too. I like holding the door open for someone coming after, I like giving directions to tourists in the city, I like trying to be as good at giving as I need to be at taking.

And that was a moment I think I got wrong.

I could have do it and did do it.

But I think I got less out of that than she did.

I think I need to brush up on my discernment skills.

Have you ever felt that maybe you made a wrong call about something like this?

WWRS (what would readers say)

We went to a movie yesterday in a building that was newly built. We'd looked forward to going there. I'm going only write a short blog because Joe and I have discussed this to death and we really want your opinion.

We got to the entry doors - they were huge glass doors, extremely heavy. We looked for the automatic door opener, there wasn't one. Nothing. Nowhere. I said that I thought it was odd that a new building wouldn't have easy access doors. But I went in through the door that Joe held open, realizing as I did that if Joe hadn't or if another person didn't, open the door, I'd not have been able to get in. Strange.

Once in and rolling over to get tickets we noticed that there was an accessible door, off to the side, completely separate from the other doors. Now it was beside them, though there was a visible barrier preventing that door from being seen when entering the main door. There had been no sign, that we saw, from outside the building indicating where disabled access was ... it was just a tucked off and out of the way, semi-hidden door.

Maybe its my natural inclination to see this kind of design as purposefully done - I wondered what the purpose was. Now this theatre is where a lot of the films are shown during the Toronto Film Festival and a lot of famous bums have been seated in the very plush seats that were in the theatre. They didn't have any real disabled seating in the theatre, either, but that's the subject of a post and a letter in coming days.

It was the door that bothered me.

Why create a whole new, out of sight, door for wheelchair users?

Why not just 'button' one of the many glass doors at the regular entry?

Could it be ...

No surely not ...

Could it be ...

No it can't be ...

Could it be that this building, which hosts some of the most beautiful people in the world has responded with a design that harks back to the 'ugly laws' ... making sure that none of 'those people' ever have to brush shoulders (or really brush hip to shoulder) with us less than perfect specimens?

Am I reading too much into this ... new building - separate, visibly and physically, door for disabled patrons ...

Could there be just a simpler reason for purposeful separating people with disabilities with the main stream of customers which enter the main doors?

Focus on Flying

There's a story that is making it's way around disability blogs and which is often posted and reposted on Facebook. It's about a woman with a disability who had be placed in an airplane seat at the front of the plane because the boarding staff didn't have an aisle chair available. An elite (?) flier demanded that she be given that seat because it was her right to premium seating because of her status. The article did not make it clear to me if she had booked that seat herself.

As you can predict .. uproar.

Two thing disturb me about this - first, and most concerning, over half of New Zealanders who were interviewed sided with the woman, thinking that she was well within her rights and that, though they would have given up their seats, they understand why the elite flier didn't. (a hit of a 'those damned disabled people and their demands' comes through). Yikes ... there is a hardening of attitudes towards those of us in the disability community.

The second is that the discussion is about the woman with a disability at all. She is a completely passive player in the story. Let's review:

1) she did not ask for that seat, she had a seat
2) the airline placed her there at their convenience, not hers
3) she could not have predicted that they wouldn't have an aisle chair available
4) the airline was asking the woman to move to accommodate the needs of the woman with a disability but that was disingenuous, they were actually asking her to move to accommodate the airlines needs.

Therefore this was a dispute between the airline and and elite flier. Disability is only a sidebar to the story. Yet, this story has made it out like:

1) disabled people are demanding
2) disabled people expect special treatment
3) disabled people are a nuisance

and most concerningly these days ...

4) disabled people take resources away from non-disabled people

I don't know Ms Black, of course, but I have been in these situations - I'd like to be as invisible as possible when in these situations. When stores, or hotels, or airlines centre me out I go through all 27 layers of hell (those who fit the norm think there are much fewer) as things get resolved. And yet, in each situation, I am seen as the problem - when, I'm not ...

A little example:

I book a hotel room, make it clear when I'm doing so I need the accessible room, I receive an email guaranteeing me the accessible room. I arrive to find out that a clerk has, five minutes before, checked another guest into the room reserved for me. Much upset ensues. The other guest is called and asked to vacate the room. Other guest comes down, glares at me for disturbing him. The reputation of disabled people sinks - seldom does anyone recognise that the guest is being asked to move by the hotel, because of their error, not by me. It becomes about me, not about a clerk who mistakenly gave my room away, not about a hotel that has a very loose policy about accessible rooms, not about the fact that I had only one option and that I booked that option. No, it becomes about what 'disabled people want.'

There are thousands of other examples. All of which shift the focus away from the real issue - which isn't my disability - and makes it suddenly like a spotlight has been shone on my wheelchair.

This story isn't about anything more than an airline asking a passenger to move to accommodate their needs in boarding the plane and getting off the ground on time. Yet, I'll bet that most of the people on that flight will talk about disability not about the unpreparedness of the airline with the right equipment and the attitude of someeone who believes that their needs need to be accommodated.

That's right - this is about needs demanding to be accommodated - the needs of ego, not the needs of mobility.

Colouring Controversy: Rocking with Roxanne.

This is Roxanne and she has become the subject of some controversy in my life. On Mother's Day we went out for lunch with Ruby and Sadie and Mike ... to celebrate and thank Marissa for all she does. To keep the kids occupied at lunch I spent some time making a colouring book for each of the girls that had pictures of things I knew they liked and a cover page with their names in large colourable letters. They seemed to enjoy it.

A few days later I asked Marissa if the girls liked the books and she said that Ruby, in particular loved the book. I then set about making another. This time I found a picture of a little girl in a wheelchair and put some text with the picture:

Hi, Ruby, my name is Roxanne. Both our names start with the letter R. Can you give my wheelchair really cool colours?

This picture was slipped in along with a bunch of other pictures of things and places that I know Ruby loves. Along with that I found some mazes and puzzles and jokes. I really enjoyed making the booklet.

I showed this to someone who surprised me by accusing me of trying to brainwash Ruby with 'my ideas about disabilities'.

What?

Hold it ...

Am I?

I just thought that since we, people with disabilities, were in the world, there was no reason for us not to
be in a colouring book. I didn't think I was putting forward an idea at all.

But ...

I am.

I am putting forward the idea of simple, natural, inclusion. Oddly, I didn't think of it as an 'idea' but as a 'reality' ... but it isn't a reality is it? It's still an idea.

OK.

So maybe I am putting an idea into a colouring book. I won't argue that I'm not.

But ...

It's a helluva good idea.

the new normal: adapting to less

I was in a local shop. It's small. It has the feel of a local village shoppe even though it's dead centre in the middle of a large city. Even though it's small the aisles are such that I can get to almost every point in the store. Sometimes I need to take a circuitous route, but devil be damned, that's fine with me. I CAN get in the store because they've taken a piece of metal and tacked it over the small lip that separates the entrance from the pavement in front. They replace this regularly as it wears out.

A friend was with me and we were chatting as I lead them over to the tea section of the shop. There is one brand of green tea that I think is better than all others. It's hard to find. This shop sometimes carries it and every time we go in I look to see if they have some in stock. If they do I buy three or four boxes. There's only 20 bags per box so that's not as much as it might sound.

The tea wasn't in stock but one of the clerks there, who I see regularly, said hello as he was passing the two of us. I stopped him and asked about ordering a few boxes of the tea. I'm right out of it and am desperate to get ahold of some more. He chatted with the two of us, agreed to order some for me and then he went about his business. At the counter the woman was quite affable as I placed my items on the counter and paid for them.

When we left I remarked to my friend about how exceptional the service was in the store. She stopped in her tracks and said, "Did you really find that exceptional?" I said that I did. I didn't feel even slightly 'in the way' in the store as I often do in the much larger chain grocery stores, I didn't feel spoken down to or patronised in any way. I felt that I was treated just like any other customer.

She said, "It's sad that for you, what I expect as the norm, you experience as exceptional."

Could this be true?

Six years in to the disability experience and I am so used to getting less that the 'new norm' is satisfaction as long as 'less' isn't accompanied by overt acts of discrimination. Covert? OK, that's fine.

I know that it's important when working with people that you set expectations high enough to encourage growth - to encourage striving for better - to demonstrate faith in potential.

I wonder if now I've set the bar so low because I have no faith in the potential of society to strive to become more - pick a word: welcoming, tolerant, inclusive - and I have absolutely zero belief that it has any desire to reach those goals.

Or I wonder if I've set the bar low just so I don't have to always be doing something, reacting to something, speaking to someone, writing to someone.

I don't know.

In fact I'm still so flustered by what my friend said that I'm working though it ... so, what do you think ... do you think that over time those of us in the disability community think that everything is fine just if it isn't horrible? I'm curious if anyone else has lowered the bar too.

Tea Time!

Yesterday I went for a cup of tea, where I sometimes go. It's one of two or three places I know where the tea is made and served, the money is turned into returned change and the tea is made - all by people with intellectual disabilities. My whole transaction, from start to finish, was done with the staff of the cafe - not with the staff of the staff.

My order was taken by a fellow who found the box of green tea, plopped it into a cup, asked me what size of cup I wanted and then poured the right amount of water into the cup. When it came to doing the money, he called for help - but he called for a fellow cafe staff. The two, both with intellectual disabilities, punched numbers into the cash register. Well, that not quite right, the other staff, who was obviously good with numbers - simply showed the tea maker which buttons to push. He seemed to know that it was the other man's sale and the other man's responsibility - so he didn't take it from him.

It was great to watch such teamwork. It was great to see them rely on each other without calling for help from one of their support staff.

This means of course that their support staff are doing a really, really good job.

They must understand that their job isn't to be there and do for ... but rather teach a whole whack of, a real variety of ... skills.

We had our tea, I had gone with a friend from work, and chatted in the cafe. It was full of sound and laughter and great good spirit.

My tea was good.

The whole experience was better.