Tag Archives: accessibility

Pride with a Side of Alienation

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Last July, I attended a Pride rally which flooded me with a wonderful sense of community, while simultaneously left me feeling alienated. When it comes to things like rallies, I often experience this same mix. Attending to enjoy the sense of community and common purpose, I tried to soak up the vibe only to ingest a nice dose of “But You Don’t Count” along the way.

I know the event was a rally about LGBT pride, focusing on issues that impact the non-heterosexual population and meant to highlight our bonds of community and common purpose. If everyone had stuck to LGBT issues exclusively, I might have not felt like “other.” However, from issues of racial equality to immigration, border security to employment rights, many speakers addressed other “liberal” causes. Lists of marginalized groups who we should stand with in their fight for equality were mentioned. Not once did disability pass the lips of any speaker. Not once.

As I sat in the “ASL” seats – because apparently only Deaf people need accessible seating – I listened to one man talk about LGBT youth. He rattled off one statistic about how many LGBT young people report hearing negative messages about their identity from the mouths of public officials. Suddenly, it dawned upon me. We think of negative messages as damaging. How harmful, though, is that which is left out entirely?

When George Takei asked us all to stand, face the flag and recite The Pledge of Allegiance with him, I had no idea where to look. As Norma Chavez-Peterson of the American Civil Liberties Union asked for us to join in the fight to help all oppressed people, those with disabilities were left off her list. A universal message of love and social justice permeated each speech I heard, yet not one person managed to identify people with disabilities as one class of individuals needing support in their fight for equality.

What message does that absence send? To me, it says that I am not thought of when issues of social justice are considered. My marginalized group is not one deserving of the same help and solidarity. I don’t matter enough to be included.

The ways people with disabilities are divergent from other marginalized groups is often the reason given for why we are not included in the list of social justice causes. We need special things that cost money, we are unable to do stuff and you can point to some substantive difference engendering more negativity than skin color or gender preference. Our difference is not viewed as diversity, making us separate from other social justice causes. And, as we all know from school integration, separate is inherently unequal.

So, as I tried to connect with my LGBT community, I had to stop thinking about my identity as a person with a disability. I could either be a member of the group being celebrated or a member of a group not thought worthy of mentioning. Very healthy for my self-esteem.

At least there is an honesty in all this. Should someone have thought to include people with disabilities, it probably would have been in word but not deed. So, for the lack of hypocrisy, I am grateful.

What He Said

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I could not have put this better myself if I tried for a week.

http://www.planet-of-the-blind.com/2014/03/the-able-bodied-blues.html

I Quit

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I’ve decided to stop being bisexual. I am neither relinquishing my attraction to more than one gender nor am I going to cease mentioning that I am bi when it is relevant. I’m merely done trying to be a member of the bisexual community.

The reason is simple: I won’t be the kind of disabled person necessary for inclusion. I am no longer willing to follow these rules:

A. Do not talk about my disability.

B. Do not discuss my disability-related needs.

C. Smile and be grateful for any bit of attention “lavished” upon me.

D. Embrace or tolerate the “Let me help you, poor thing” attitude that comes with any aid.

E. Allocate my disability-related needs to the realm of wants subject to the “whims” of people’s “kind” hearts.

F. Let prejudice behavior and policies exist without naming them as such.

So, today as the bisexual community comes together to celebrate and raise its visibility, I am taking a giant step away from that community until I can be both disabled and bisexual at the same time.

I have not made this decision lightly or in haste for it is only after years of working as a leader in my local bisexual community that I have come to this crossroad. The last three months, as I’ve taken time from that leadership to focus on health issues, I have watched as any acknowledgment of disability vanishes from the activities of the local bisexual community

Then, too, there is the behavior of the bisexual community on the larger national scene. My comments on accessible practices have been snubbed. Requests that people think about accessible formats are not acted upon. Disability might as well be a planet in another galaxy given the amount of attention it receives.

Finally, there are the individuals that compose the bisexual community. I am the eight-year-old child at an all grownup party that never conceived of a child being present. While this is not substantively different from how I am treated in heterosexual social situations, I would have expected more from a collection of people who routinely experience social isolation and discrimination.

Today, more than nineteen years since I left my closet, I am not exactly returning to that enclosed space. I’m leaving the bisexual building and only going back for brief visits when my bi friends invite me. Maybe the whole “Be polite to guests” principle will apply.

[If you are left thinking, “Wow, she’s angry,” then go read the previous entry for my perspective on anger.]

……because

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It all began when a person in a wheelchair boarded my bus and the driver made the person with the cart move to a seat where the cart would obstruct the aisle. I was not asked to move, but after the bus got underway again, I turned to the cart’s owner and suggested I relocate so she could have a seat where the cart would fit. In the process, I bumped my head.

……because I tried to help.

Next stop my psychiatrist’s office. Typically, his patients flip a switch to indicate their arrival. I cannot do this since there are no accessible labels and I cannot seem to retain the switch location in my head. It has never been an issue in the two years I’ve been seeing him — he’s always come out into the waiting room to retrieve me. This time around, when I had waited ten minutes past my allotted time and could hear him speaking back in his office, I called leaving a message on his voicemail indicating my presence. Another patient eventually arrived, flipped the switch and my doctor materialized, seeming surprised at my presence.

When I said, “Um, I don’t know which switch to flip and this has never been a problem before,” his reply blew my mind. “I just thought you weren’t coming. I never thought about the switch.”

……because I’m so unreliable.

Next was the man by the elevator. He clearly wanted to be helpful, did not know how and used hovering as a means to deal with his internal conflict. He kept telling me things I already knew or was working on figuring out and then continued WATCHING me.

He did alert me to the goo stuck to Camille’s leg, becoming flustered when his phone rang while he was trying to pull it off. I waved him away, determined removal by pulling wasn’t going to work and took off. While waiting for the bus, I used the handy scissors on my pocket knife to remove the goo-matted fur from Camille’s leg.

……because boy scouts have nothing on me.

Once again on the bus, I was sharing a three-person seat with a man, who moved when an elderly woman joined us. The woman made loud, critical declarations about his behavior and I think I offered something like, “Maybe he thought three people and a dog was too much on one seat and decided to give us some space.”

Then the woman began to tell me about her blind neighbor. This *never* turns out well. Ever. Her neighbor was “so amazing” for doing everything on her own, even shopping. She could cook, too. It was all just so amazing that she thought the woman couldn’t possibly be blind and had an argument with another neighbor about it. I suggested maybe she could change her definition of what a blind person could do.

I was then told about how this blind woman assembled her nephew’s birthday present on her own, using screwdrivers and everything. “Amazing” was repeated a few more times. I said I liked to assemble furniture.

The topic shifted to her evening’s attendance at a baseball game. She has back trouble and the stairs are really steep. I commented that it sucked that ball parks weren’t accessible to everyone.

She thought it was just wonderful that strangers would reach out and offer their arm so she could descend the stairs. I repeated my comment about lack of accessibility. She repeated that people were just so wonderful.

……because “wonderful” and “amazing” hadn’t been said enough.

Off the bus and walking home, I was crossing a street when not one, not two, not three but FOUR skateboarders whizzed past me while I was in the middle of the street, startling Cam so much she actually moved sideways and stopped in her tracks..

……because the joy of boarding trumps the safety of others.

Upon arriving home, I yelled “ARGH!” at the top of my lungs and then did it a few more times. Camille went and had a drink of water. About when I stopped the yelling, she walked over and vomited up… everything at my feet.

……because a comedic author is clearly crafting the story of my life.

Service Models

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Whether governmental or private, agencies aiming to help people function on the principle of doing the greatest good for the greatest number. Whatever their niche, their goal is to provide services and support to as many as possible. It becomes a formula composed of maximizing benefit while husbanding resources all targeted at the typical person trying to be served. Thus, support that does not attract the target population is discontinued and services not utilized by a significant number of people are viewed as wasteful.

Think about the nature of people with disabilities as a population. Because of lack of access, we often are not engaged in community life. This lack of visibility means our need for access isn’t obvious or immediate. Thus, there continues to be a lack of access and we remain undetectable.

Even when we have full access, our presence is still in the minority, especially when we are subcategorized based on our disability-related needs. Because Deaf people need one thing and blind people might need another, we become separate items on a to do list and different line items on a budget. “Full access to all people with disabilities” becomes meaningless to an agency head when the reality of our differing needs factors into program development, planning and funding.

To meet the needs of our seemingly small population, the expenditures of effort to become educated about how to accomplish it and the money necessary to achieve it are high. In contrast, the payoff in terms of benefiting a few people seems small.

When the typical service model meets the needs of people with disabilities, things do not turn out well. Why would an agency expend significant resources to benefit only a few individuals? How can continuing a program that only serves a few people be justified? How do you overcome the seeming illogic of providing services when there is nobody there to partake of them?

I have been confronting these issues for quite some time as I attempt to convince my local LGBT Community Center to make some changes that meet the needs of blind and visually impaired people. My basic plea, “I know there aren’t a lot of us running around here, but this still matters” has not penetrated. They are an agency engaged in serving a specific population trying to make scarce resources stretch to meet that community’s needs. Why bother with the needs of 4 people that will take away from benefiting thousands? Within the parameters of the service model they utilize, they are entirely right.

In the past year, I have also worked with my local Pride organization. Theoretically functioning within the same service model, they have taken a different approach. “It’s important.” While far from perfect, there is at least a desire to provide the services disabled people need so that they too can fully participate in and enjoy Pride.

The striking disparity of the two experiences has been heavy in the back of my mind. The conclusion that finally emerged is that those ingrained in the service model I’ve described do not suddenly look up one day and see the shortcomings of it. Until they do, there is nothing you can say or do that will convince them that inclusion of one disabled person is important in a way that exists outside of resource marshalling, the greatest good for the greatest number, and the bottom line.

The funny thing is this: service agencies are there to help people. The bottom line is supposed to be the business of corporations and accountants. When did the business of helping become the business of exclusion, dollars and cents?A

Inclusion Door

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To my ongoing frustration, the theme of encountering ablism at every turn has not ended.  One trend weaving its way through my experiences is the idea that entities make changes and provide accommodations “when someone asks for them,” where someone actually means multiple people at various times.  This leaves me with a question: Should you be required to knock repeatedly before the inclusion door is opened?

Riding The Bus With My Dog

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Ever wonder why bus drivers need to announce *every* stop? Here’s a great example.

To conserve energy so I could attend a yoga class, I decided to take a bus one way to the vet’s office. As usual, while swiping my bus card I told the driver my destination. After sitting down, I pulled out my phone to monitor the street numbers as they passed. My first mistake was in putting the phone away just before my destination.

The driver did announce all the stops, which had me convinced she would also indicate the one I needed, even if she forgot I wanted it. That was my second mistake.

She didn’t announce my stop nor did she stop. When she announced the stop after mine, I called to her, “I wanted 39th?” I think her response was simply saying she’d gone past.

When I got off, I inquired, “How many streets back is the stop I wanted?”

“You should cross the street and take the other bus back,” she replied.

“Don’t have time. Do you know how many?”

“Two or three maybe. Sorry,” was her answer, with the apology covering either her lack of knowing or her mistake or both.

Armed with this wealth of information, Camille and I began walking. About the time I reached the second intersection, it dawned upon me that I would need to cross either on or off ramps for a highway. Having never done that in my entire life, I was a bit…. concerned. With a crosswalk and light, it was probably one of the safer ways to cross an off ramp, but without an audible signal, it was still daunting. I spent a long time listening to the traffic pattern trying to figure out how you timed things.

I have to say that my little black dog was awesome. I might have been flipping out, but she was a total pro.

And then we had to do it again on the other side of the overpass.

Bus drivers are suppose to announce *all* stops whether they pull up to take on or disgorge passengers precisely so that blind people can get off where they wish. This driver’s mistake put me in a pretty unhappy situation only mitigated by the fact that my dog is good at her job.

Apples and Oranges

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A member of a musical duo I adore was chatting with me after one of their shows, which we have done many times before. He asked how I was doing and I replied that it had been a struggle of late.

As he put his hand on my upper arm, he intensely said, “You need to sit and really listen to the new CD. It’s all about that.”

I took it home. I sat. I listened. I did that pretty much every day for three weeks. I still couldn’t connect.

It wasn’t that the music lacked emotion or that something didn’t quite come together. It’s a great CD and the artists in question conveyed their message well. I just couldn’t identify with it. At all.

I had an extremely hard time with this fact. A musician I respected felt his work would speak to me. Why couldn’t I hear it?

It took five months for me to figure it out. They’re singing about apples while I’m trying to juggle oranges.

The music conveys the inner struggles around love and relationships, not so much about love gone wrong or love unrequited, but about how one’s thinking can keep you from finding love. Clearly someone went through emotional hell trying to discover why he longed for love but couldn’t quite embrace it. It has a more general message about hitting bottom emotionally and then finding your way through it discovering that the journey through the awful helps you better appreciate things. At it’s core, the music is about inner struggles to overcome internal obstacles.

My two ongoing issues are my medical complications and social isolation. Obviously the problems my body has developed cannot be solved by an emotional struggle. My esophageal muscles will not become strong because I searched my soul, figured out the problem in my head, and fixed it. In other words, it’s solution is not within myself to discover and implement. It requires doctors and tests and surgery and living with side effects and hoping it all works as advertised.

Social isolation seemingly has a more emotional basis for all I need to do is get out there, overcome my shyness or other maladaptive social behaviors, and I’ll meet people. That’s all within my control to fix, right?

What happens when you do all of that and the only result is frustration and a bone-deep belief that it’s not you? With every fiber of my being, I have come to believe that my social isolation is a factor of how others perceive me, social norms, societal beliefs, and how what we are consciously or unconsciously taught shapes our thinking. I could be Mother Teresa or Hitler and the bottom line wouldn’t change all that much.

In case you need a little bit of proof, I am more active in the world than I have been in probably twelve years, yet it has not had a perceivable impact on how many friends I have, the quality of those friendships, or dating. While it is true that many more people know who I am, that has not translated into meaningful human connection. In fact, in many ways being more socially engaged has only served to highlight my inherent aloneness.

So, while the musician was kind having the best of intentions to offer me solace, it didn’t work. They sing about apples and I juggle oranges –both fruit, but very different. American as orange pie? Fresh squeezed Florida apple juice? Okay, maybe the second one if Florida had the appropriate climate.

Hope

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While introducing a song entitled “Hope,” a local San Diego musician gave an inspirational pep talk that exemplifies what I have heard time and time again. To paraphrase: Everyone goes through hard times and the only things within your control are your attitude and your effort. With a good attitude and if you try hard enough, you will get through it.

He’s not wrong, exactly. He’s just talking about some subset of people to which I do not belong. They are folks whose “hard times” can be gotten through with the right attitude and sufficient effort. I’ve watched it happen, so I know attitude and effort work for many. I’m just not one of them.

Attitude can accomplish a great deal, like when I focus on what I might learn from a situation or the humor that exists within a predicament. It cannot, however, transform steps into a ramp. Similarly, my attitude can’t morph someone’s ignorant behavior into a more palatable experience. Being treated badly can be endured; Being denied access to something cannot be overcome by the powers of positive thought.

Similarly, effort is problematic for me. My chronic illness limits my energy leaving me with definite constraints on the sweat I can expend. Thus, I do not have the luxury of endless get-up-and-go necessary to fix misfortunes.

Perhaps the key here is what the musician meant by hard times. I’m fairly certain he wasn’t referring to the kinds of situations I encounter. Instead, he means troubles universal to all human beings such as the death of a parent, having something stolen or getting your heart broken.

What rang false as I listened to his pep talk are all the things I encounter each day that are unique to people with disabilities. Inaccessibility, lack of accommodations and people’s ignorance create some of the most distressing problems I come across. Attitude and effort cannot resolve all of them. Sometimes, I’m left with lousy circumstances not of my making and beyond my ability to fix. With them, speeches about attitude and effort leave me feeling hopeless not hopeful.

Case in point. I’m dealing with the way social perceptions of disability make friendships harder and reduce my chance of finding a mate. Emotional intimacy is as central to my mental health as calories are to my physical well-being. I cannot force people to befriend me nor can I change how they perceive me by thinking positively. If someone keeps you from food, eventually you will suffer physically. If what keeps me from adequate human connection is other people, how is that really different? How is trying hard or having a good attitude going to feed my soul?

I never know what to say to people like this musician. For them, effort and attitude work and I do not want to discount that. Unfortunately, he is talking about peeling apples while I’m trying to peel oranges.

So, I sit in the audience feeling like I do not belong alienated by someone who is just trying to help people get through tough times. I become the invisible other apart from the crowd I inhabit and isolated from the human experience being referenced.