Tuesday, December 20, 2011

And Again

Sometimes I wonder about why I write this blog.

Sometimes I wonder about the repetitiveness about the experience of living with a disability. Of dealing with, not the disability, but the issues it brings with it. Little did I know when I sat down in a wheelchair that my world had changed so dramatically. I imagined that I'd have difficulty adapting to rolling, to curbs and to barriers. That, surprisingly, was dealt with within days of being disabled. I became used to adapting, planning, looking for alternatives. I became used to back doors, back alley entrances and hidden passageways. I became used to marking both places where I was physically welcomed and places which simply were no longer part of my world. I became adept at living that life, learning how move anew in this world. These frustrations are part and parcel of what it is to move differently. I want change. I see change happening. I knew that I'd need new skills, both of mobility and of flexibility. I've written often of this. I fear boring you.

What seems to be so incredibly repetitive, and remarkably frustrating, is the million ways that people and systems create barriers. That planning, even meticulous planning, is meaningless when people don't listen, or rather when they pretend to listen and then just don't do what they promise to do. Hotel rooms booked as accessible turn out to be completely impossible to navigate. Restaurants who claim accessibility but the toilet is down a flight of stairs. Stores with an accessible till that is rarely open. Even phone calls and chats with real live people don't guarantee anything. I have learned to mistrust. Completely mistrust the word of non-disabled people who talk to me of accessibility.

The incident behind this is what happened this weekend at Roy Thomson Hall. We went to see the Messiah and I carefully called, as instructed to do on their website, and booked an accessible seat. Everything should have been OK. We pulled up in front of the building and a Hall staffer was there as I got off the bus. She said she was there to ensure that we got to our seats OK. When she realized we had to pick up our tickets, she directed us to the Box Office and said she would meet us inside. We got our tickets, impressed at the seeming willingness to be of assistence.

That ended soon.

I handed her my ticket and she said that we weren't on the 'wheelchair list' - God how I hate being referred to as a 'Wheelchair'. I told her that I had booked accessible seating and she said, 'Oh, really?' I was immediately miffed. I didn't become disabled yesterday. I've been booking accessibility for years, I know how to do this. Well, we weren't on the list so the seat hadn't been removed. She knew I was upset and she pointed us to the elevator and told us the seat would be removed by the time we got there.

It wasn't.

The woman overseeing that area went off in search of someone to take the seat out so I could get in. She hadn't been told of me either. The fellow came and I actually apologized to him for bothering him. He wasn't rude but he wasn't nice about it either. Clearly he was disturbed at having to do this for us. OK, I don't know how to make this better.

It got worse.

I asked where the accessible washroom was on my level. There wasn't one. To get to the washroom, I'd have to go all the way back to the elevator and go down to the main floor. It had been made very clear that people who were late would not be allowed in. I asked if it were possible to make it to the elevator and washroom and get back during the fifteen minute intermission. The woman thought for a second and said, 'Probably not.' I then asked if I was delayed because the bathroom was so far away (versus the washrooms for the non disabled which were just outside the door entering into our section), would I be allowed in. She said without hesitation, 'No.'

Oh.

So I went to the washroom just before it was time to take our seats. Then through the whole first session I worried about having to go pee at intermission. I worried that I'd make it so Joe would miss the second half. I worried myself into having to pee. As soon as the first half ended, I turned to the door, I usually wait for people to leave so I can get out without an audience, but I was at the door and Joe opened it for me. We raced to the washroom, waited for one to come free, then raced back upstairs. We made it with a few minutes to spare. I realized then, I just wasn't having fun.

Great.

It took a strength of will to focus on the music and the surroundings and simply forget about the first half and the worries that came with it. Forget having booked seats carefully and then arrived to find the promised seats not made ready. Forget the fact that people treated me like I ... was a liar ... was upsetting their routine ... was more bother than I was worth. Forget the fact that I was being held responsible for their poor planning, why would you put wheelchair seats and accessible washrooms so far apart? Forget that I'd worried all through the first act. Forget that I'd become unpleasant and difficult with the staff. Forget all that. It took an effort of will and sheer bloody-mindedness to focus simply on the music and the message within the music. But I did. Joe did.

This. This is what I'm having trouble getting used to ... having to rely on others to do what they say they will do. To expect simple, decent treatment as a customer and get something much different instead. To deal with people who have the power to make decisions over things as basic as my bladder, who seem to love wielding that power. To lose my anonymity when I arrive and have to have a fuss made about what should have simply been there.

That's the difficulty.

Those are the barriers that upset me.

And I get tired telling the same story over and over again.

But I have to.

And I thank you, deeply, for listening.

31 comments:

Glee said...

I had a similar experience where the space was not ready. The whole huge crowd of people who were behind me at the door just had to stand there while the useless bastards sorted it out. My friend said "why don't you make a complaint?" I said "why don't you make a complaint?" She "but it is not about me". Me: so you are not waiting as well? you are not annoyed about this? you are not being made to wait and be embarrassed in front of all these people? She thought and said: weeell yes.

As an "Associate" under the Australian Disability Discrimination Act she was covered too. I explained to her that actually she was being discriminated against too. She did get that.

Did she make a complaint? NUP!

Is she my friend anymore? NUP! but mainly cos she ran off with my husband! totally useless woman!

Glee said...

You keep writing Dave cos I share your posts on Facebook all the time to spread your words. Remember there are still millions of ableoids to educate!

CL said...

I'm sorry that you were treated so poorly. I had a similar experience with the rule that you can't go back into a theater if you get up to use the restroom -- in my case, I was on medication that meant I needed frequent trips to the restroom. I had to get up during the first act, and I missed it. I spent the entire second act worrying that I would have to get up again. It completely ruined the performance for me.

I understand that people getting up can be disruptive, but I think that needs to be weighed against accessibility for people who may need frequent or unexpected breaks.

Anonymous said...

Dave,

please go on writing!

You are the one often showing me, that I am not the only one worrying or being frustrated.

Even if there are people out there who love me as I am I often experience that I am the only one in charge of myself, my body, my disability.

Thats why I have those controll issues.

In the end it is nearly impossible for me to rely on others to make me feel comfortable.

Thats sad, I know.

It take diuretics (water pills) and sometimes have to weigh the risk of my health against taking part in an public event.
Sometimes I just skipt those medication.

But that is not something that might help you.

Just go on enjoying as much of your leisure time with Joe as possible. Hopefully the experinces will get better one day.

Julia

Wendy said...

What a nightmare. I'm amazed you were able to focus at all on the performance. I'm stunned by the response of the staff. They should have been the ones apologizing and then speedily making it right and ending with another apology for the "misunderstanding".
For the record, I don't find your blog repetative. You may riff on the same themes sometimes but the stories are never dull.
You share when places get it wrong and when they get it right. You share your wonderful family with us. You've told us about funny things that have happened and magical moments in your day to day as well as the frustrations that accompany your journey on wheels. Write on, I say!

Jeffi said...

I hate it that you have the same kinds of stories to share repeatedly. It shouldn't be like that. The sad truth is that justice and fairness to not come about in this world just because they are the right thing to do. You shouldn't have to experience and tell of the same situations again and again but that is what it seems to take to bring about awareness and change in this world. It has been true of all the important social shifts that have happened regarding race, gender and so many other things. This work makes us angry and weary and it isn't fair and shouldn't be necessary - but it is. We will keep listening and joining our voices with yours in our own communities so that one of these days, accessibility will be no more of an issue or problem than the right of a woman to walk into a bank and open her own account without a father or husband present.

Andrea S. said...

So very often, when I arrive at a hotel, the accommodations I have requested have not been put in place. Sometimes the deaf accessibility kit has not even been put in the room. Sometimes it is there but has not been set up--they leave it to me to set up! These days (unlike the first few years after the Americans with Disabilities Act was passed) the accessibility equipment they use at hotels works very differently from the equivalent equipment I use at home, which means I have trouble figuring out how to set it up, so I ask someone at the hotel to set it up. They do, but often the ONE employee who has supposedly be trained in how to set it up is not there, so the person who comes in to fix it doesn't have a clue, figures something out, but sets it up wrong. For example, I have had equipment that picks up every single cough, clap, or other silly little noise I make and flash the light for all of them, which gets very annoying and distracting. But it will still fail to flash for an actual knock at the door that it is SUPPOSED to flash for. So I often end up turning off the equipment and just not using any of it -- meaning I don't know if someone is knocking at the door to get my attention, or if the fire alarm is blaring meaning I should evacuate. Even the accessible (vibrating) alarm clock is often so impossible to figure out that I have simply given up counting on the hotel to provide me with a clock I can actually use. I now have my own portable vibrating alarm clock that I bring with me on all trips, even when I have bothered to ask for ADA accommodations in the hotel room.

Television is usually easier because these days (since a US law was passed and implemented from July 1, 1993, onwards) all TV sets 13 inches and larger now have a built in caption decoder--it's no longer separate from the TV like it usually was in the 1980s. So at least I can count on the TV having the caption decoder. EXCEPT THAT, some TV models make it basically impossible to figure out how to turn on the caption decoder: I have sometimes spent as long as 15 minutes experimenting with different options in the menu before finally figuring out how to turn on the caption decoder. It shouldn't be like this--every remote should have a button on it that turns the caption decoder on or off, they should not bury such an essential device under 15 layers of menu options.

And EVEN THEN ... sometimes in hotels, the caption decoder STILL does not actually work because occasionally a hotel will have its own internal cable TV system that for some reason strips the captions off all incoming TV programs.

My situation is different from yours in that I can still get by without the accessibility equipment if I must, which gives me the option to just put up with not being able to actually use any of the equipment they give me for their intended purpose. But when I do this, I still end up with a sub-standard experience. And as you say, all of these things should just be there when I have specifically requested for them to be.

Housewife83 said...

It's really important that you keep writing your blog because it helps people like me who are ignorant about these issues to understand better and I hope it will bring about change.

No one can really understand what it is like to be disabled until they are put in that position so posts like yours do wonderful things.

I'm heavily pregnant at the moment and I struggle to walk far these days. It's been like entering a different world even though I'm walking about in the exact same world. I realise now how tiny little accommodations can make a huge difference to my day.

For example when I walk into a large shop I want clear signing of where items/collections/themes of things are so I can take the most direct and easiest route to them. Frustratingly there are often no signs at all and I'm left with two choices (as there are never members of staff by the door), give up and leave the shop or wonder around aimlessly until I find what I'm looking for - ultimately tiring myself out and putting myself in pain.

To other people it probably sounds petty (and I'm not for a moment trying to suggest that it compares to having to navigate the world in a wheelchair) but it really impacts my life. I used to love going into town by myself, doing a little shopping and sitting down for a coffee somewhere. I haven't done that in months because the world just isn't as accessible to me as it used to be. I've stayed in for the last few months because I can't guarantee a seat on the bus and I can't guarantee the shops will be accessible. The pleasure I used to take in this activity is now totally overwhelmed by the potential stresses and strains it puts on me.

What's sad is it needn't be like this if just a little thought and planning was put into the little things.

Maggie said...

You've never bored me, thanks. Any repetitiveness in your blog -- which is actually less than you think, even though the 'barrier' incidents are altogether too repetitious on their own -- just serves to keep getting my attention.

Speaking as a 65-year-old TAB, I need t have these issues brought to my attention. First, because I have been appallingly indifferent to my privilege as a member of the 'exclusive able-bodied club'. And then, because one day I may need to deal with the same barriers myself, and forewarned would be good.

Reading your blog for the past 3 years has me speaking up in all sorts of situations:

* No, we can't hold a conference in a second floor room with no elevator

* No, we can't require conference calling for every online class -- some of our folks don't do audio and we've never stipulated they should

And so on.

Keep wriing, keep venting. Maybe someday we can all celebrate Universal Design occurring universally!

Molly said...

It's posts like these that really make me MAD Dave. How hard is it to show kindness to another human being? I get mad at all the people who treat you like an inconvenience. The response would have been "Well I'm very sorry about this sir. I understand that the fact that the bathroom is far far away is unacceptable. Here's what we'll do. You go, and regardless of when you get back, I promise you that I will guide you back to your seat because YOU ARE A HUMAN BEING WHO DESERVES TO HAVE FUN AND BE ABLE TO PEE WITHOUT BEING STRESSED."

Oy vey. is that so hard?

I'm glad you share these stories. You've really opened my eyes. I remember one time, I hit the handicapped/automatic doors button on a school building and they didn't open. I thought "this would make things harder for Dave" and I called maintenance and asked them to fix it, so that the next person who needed to get through those doors didn't have to be inconvenienced.


It irks me to no end that people act like you are an inconvenience. YOU ARE DAVE. plain and simple.

Naomi said...

Dave it may be repetitive to you, but that is why it matters. Because none of us get upset about a single incident, it could happen to anyone. What is draining is that it happens so often, and despite all the effort it takes to avoid it happening and the only thing that will change it is an understanding of the toll it takes. To be excluded constantly is overwhelming and soul destroying. Keep writing. Nobody will change unless they begin to understand. Thanks for being brave enough to tell it.

Belinda said...

Not just listening but feeling sad and ashamed (I don't know why--but I would be proud if they had got it right) that such an event was spoiled.

Rachel in Idaho said...

I guess I've just gotten used to it, as I was born with what I've got. I've never expected to be properly accomodated because I so rarely have been. It doesn't even take much for me, but even that little bit is too-often nonexistent. Wanted to be, yes, but never ever expected. That sounds sad but I've always just assumed deep down I had to be the one to do all the adapting unless somebody went above and beyond.

Keep writing, you've gotten me thinking differently about these things! Really. Your experiences come from a huge change in perspective I never had, which is very valuable to me.

Anonymous said...

To me, your blog has a nice balance of uplifting, entertaining and, yes, sometimes, infuriating snippets of real life. It's usually the first thing I read each morning when I get to work and there are days when it may be the one thing that keeps me form turning around and going back home!

I have worked in the field of services to people with disabilities for over 20 years and, in addition, my partner is disabled due to liver failure. I see our lives and daily struggles reflected in your blog over and again. It's not easy, but it's much harder when I feel like I am doing it alone.

Your blog helps me feel like I am not alone in my expectation that people deserve dignity, compassion and equitable treatment. Thank you, Tom

liz said...

I feel such gratitude for your telling your story. Because of you, every day I actually notice what I didn't notice before. I notice steps, and missing ramps, and missing curb-cutouts.

I notice displays blocking aisles, and I notice broken doors.

And, because of you, I speak up.

Anonymous said...

What a shame. I mean, it is not acceptable that small places with little budgets have difficulty adapting their environments into ones that are accessible for all. For a huge place like Roy Thompson hall this is utterly unacceptable.

In some ways though it is the human component - one of the most transcendant musical experiences possible was ruined by human inaction, incompetence and thoughtlessness.

As a person who has been in choral performances at a high level a number of times in my life - you are so busy focusing on the music that you would never notice someone getting up to pee. This is a ridiculous rule.

Anonymous said...

Please keep writing it helps us all keep righting...
L

Jazz said...

Oh, Dave. Keep on blogging and sharing your experience. It helps all of us who share your frustration feel like it's not just us who feel these things, that things actually are broken (we aren't broken, the systems and thinking/non-thinking of organizations and such are).

I have spent all of my professional career being frustrated by organizations that do not treat me as a human being with needs. I changed jobs every year or two for the past 15 years, never building my career or advancing because of it. While I excelled in all of my positions and had nothing but glowing performance reviews and the esteem of my colleagues, simple requests of the organization to accommodate my physical needs are treated as huge issues, and I become a "problem staff".

Because I could no longer endure the frustration without opening my mouth (I lost my filter after years of feeling shat upon), I retired 20 years earlier than I had planned.

From HEALTHCARE. That speaks volumes.

I gave up. Which is not OK, but I just couldn't do it anymore. After years of coming home daily in tears, and being treated as a second class citizen because of my medical needs I could no longer fight.

But I know that all of us have to. That the fight isn't over, that the only way that systems, organizations, and people will become more considerate and understanding is with education.

Some day I may have it in me again to go back into the fray. For now, I capitulate. I give.

Please don't do the same. You have the connections, clear voice, and power of your organization behind you. Your everyday experiences and stories mean something, and teach us all what it means to live in this world with disability.

Because my disability is invisible, I have different challenges than you do. But, the challenges are there nonetheless. Inconsiderate people are there no matter the disability.

We all root for you, Dear Dave.

Don't quit.

mybrainyourbrain said...

I love that you write this blog, there are posts that makes me sad, angry, happy, hopefull.

I like reading about things that I am totally ignorant of, like acessibility for people with physical disabilities, it makes me really angry to read that you and others have so many problems but I wish people learn and improve, today I notice things I never noticed before because I learned reading here.

I do understand part of your frustration since in today's world I can't go to many places because my type of autism doesn't let me tolerate things like background music (placed everywhere) and sounds, smells, etc, but that is not classified as acessibility and nobody would understand why I can't go to most places.

Anonymous said...

Please keep writing. You speak for so many of us.

There are times I tell my husband I don't want to go out for the evening because I don't want to have to fight for the right to be in a restaurant with my service dog. I just want a date night dinner with my beloved, not another argument. So instead we stay home because I have no more energy in me to fight. I get so tired of fighting for things that are my legal right! I get so tired of being told I expect too much or that I see discrimination too easily.

Keep writing Dave, please.

Anonymous said...

Dave, I also have problems in theatres. I am able to walk without support or aid. However I suffer a severe phobia with a fear of heights (steepness of theatres within a closed in area)and whenever I ask for help I get treated like a problem rather than a customer / human being.
Sometimes when flush with money, I can offer to pay to get over my problem. But this rarely solves the issue. Dave, UK Devon

Anonymous said...

. . . interesting that they consulted with Yitzak Pearlman when they built RTH back in the 70's - to be sure that it was fully accessible!! How much further could they have strayed from their current status!!!!
Sorry that your performance was so hard to enjoy!!! You pay full price for your tickets - you should be able to get full benefit!!

Louise said...

My theatre problem (or more precisely, my foster son's) is that removing one seat does not make for accessible for all. He sits in a shell in a wheelchair, and is tall. I ring ahead, I explain his situation (he doesn't speak easily). I say he won't fit into a one-seat space and needs either to be in a front row or to have a seat removed in front of him as well. They assure us they have the facilities. We arrive, invariably, to find he needs to sit sideways and watch the performance out of the corner of his eye. Note he is not in an especially inclined chair, or a bed on wheels, or anything particularly unusual. Just tall, and not able to tuck his legs under his seat.
I guess the battle just keeps on going - each time, maybe, one more person understands...... and it's certainly so much easier than it was 35 years ago when he and I first started hanging out together!

Ashley's Mom said...

You were writing my story (as well as your own) and the story of my two children who use wheelchairs. After 16 years of dealing with this same cr*p, I too am really tired of it all.

Flemisa said...

Hope you also let Roy Thomson Hall know, I think that some places have the idea that it wouldn't occur at their location and they need to know it can. A big hurdle seems to be people's attitude and that takes repeating and focusing on them. Maybe you should offer to do a workshop for them.

Hope you and Joe have a great Holiday Season with lots of good music and friends and laughter. And a gift I get abd love is your blog each day even when it pulls me up short or saddens me. Best wishes.

wheeliecrone said...

Dave, sometimes I feel like the only wheelchair-user who has these things happen. Just as you describe.
I book tickets carefully and make a point of making suitable arrangements and arrive to find that nobody has any idea about the wheelchair booking and no the seats haven't been taken out and yes we will do it but it's really an imposition. I am treated as if my being a wheelchair user is just something I am doing to annoy others. I am treated as if I am less than.
It's wrong, Dave. It's wrong when it happens to you and it's wrong when it happens to me. And thanks to your blog, I know that I am not alone in the world. I am not the only person who is being discriminated against in this way.
Thank you and please keep on writing.

nycivan said...

Dave, I just wanted to chime in and add to the chorus about your blog. It is the first thing I look for when I check my very buys inbox. I truly enjoy reading about all your adventures and even the down times like this one because I admire the way you conduct yourself.

Please dismiss the idea of not writing.

thanks

ivan

nycivan said...

i meant very BUSY inbox

Anonymous said...

Dave,

Love reading your posts, they are NEVER boring!!
Sorry you were treated so badly and that it spoilt the first half, at least you have enough will power that the second half was enjoyable!

Crow Jane said...

Accessibility is a myth.

Yesterday I was dropping a client off at school after his yoga class. While the handicapped parking spots are located in front of the school, they are also, as I discovered, located behind the drop off lane which resulted in all the parking spaces being completely blocked off that day (most of the high school had a half day.

After driving around for about 30min hoping traffic would clear up I gave up and ended up using a space near the field (I figured that it was at least big enough to fit the van). I would have driven longer but unfortunately I had a doctor's appointment that day.

All the while I kept on thinking. "What if I was in a wheelchair, was by myself, and was visiting the school?"

I thought about this as an impatient parent honked at us as we walked across the crosswalk.

I continued to think about this as I searched for a path to accommodate his wheelchair, and wouldn't result in us having to walk along the rather crowded parking lot.

And when the receptionist shrugged my concerns off, I really thought about it.

People who use wheelchairs, have seven options as to where they can safely park. Seven.

It is a big deal.

Lene Andersen said...

I know. Boy, do I know.

Send a copy to this with a letter to the CEO (or whatever). They take action when you let them know you've told the public about it. And it can make a real difference so next time, you (or someone else) won't experience this.

It's exhausting and demoralizing and sad-making, but we who have a voice have to.