Is It?

Today you all have the power to decide! Does the following constitute discrimination and/or an illegal act?
Earlier today I received a call asking me to participate in an online survey about music in my area with monetary compensation offered as incentive. My obvious question had to do with screenreader accessibility of the online survey. Managers were consulted and they did not know the answer, so they decided to skip me as a possible subject. The man was most apologetic telling me they would use this experience to get better information the next time around.
This is not the first time I have been unable to participate in a survey because of disability and I suspect I am not the only disabled person to have such an experience. When those conducting a survey limit their subject pool by disability, doesn't that skew the results? Does anyone ever cover that confounding variable when they publish the study findings?
The broader question, though, is whether or not this is discrimination and since they were offering pay, illegal based on employment law. I suppose an additional question exists: Am I being utterly ridiculous to frame this issue in terms of discrimination and the law?

Avoid Disability Access Act

(In Becoming *That* Person, I mentioned I felt the ADA had been mutilated and Omniwomnbat was surprised. I promised an explanation.)
The Americans with Disabilities Act was a bipartisan piece of legislation that was passed after compromise and concession on all sides. While it does stipulate deadlines for various types of access to be accomplished, the actual regulations are not within its text nor are terms like "reasonable accommodation" concretely defined. Furthermore, the more vagaries in a law the more the court system can "interpret" it.
So, we have this law that was passed based on compromise only outlining deadlines and abstract goals with vague language and enforcement left up to the whim of the executive branch and the interpretation of judges. While the goal was noble and necessary – to provide a means for disabled people to become full participants in American society, the law's shortcomings make it less effective.
Let me give you an example. Back in 2007, I decided I wanted a cellular phone I could actually entirely operate independently, so I began research. Turns out that there are regulations – The Telecommunication Act – that govern this. They said that cellular phone service providers had to make all reasonable efforts to offer phones usable by disabled people. Unfortunately, those regulations were not clear as to which disabilities, how many phones needed to be usable, and what effort was considered reasonable. Moreover, individuals were not allowed to file lawsuits to force compliance. The only recourse was to file a complaint with a federal agency that was not currently enforcing any part of the regulations. Therefore, cellular service providers were doing things like stripping away accessibility features to make space for graphical content. They were allowed to order cell phone manufacturers to exclude accessibility so that one line of phones progressively became less usable by blind folks. I eventually had to buy a smart phone with more functionality than I needed and third party software costing $300.00 in order to be able to actually enter contacts in my phone. (Now I have an iPhone requiring me to only turn on the built-in screenreader.)
Phrases such as reasonable accommodation, undue financial burden, and even what constitutes a disability have come under much scrutiny. Rather than giving some simple formula such as if a restroom renovation project costs $100,000.00 to do 3 stalls, the extra $5,000.00 to make 1 stall accessible is reasonable. However, if re-doing an entrance to a store costs $500 to accomplish, but electronically opening doors cost $1,000 for a company in the red, then perhaps it is not reasonable. (And, yes, I'm making up these numbers.)
Over the years, the court system has in fact ruled to limit what is considered a disability under the ADA. In the beginning, Attention Deficit Disorder, for example, was included and I know at one point it was specifically excluded. There has also been a huge debate over HIV and addiction.
The ADA is unfortunately an excellent example of the problems in our legislative system for any bill with concrete language would never pass because of pressure exerted by special interest groups. The true solution is to have a system where common sense can rule the day, but that's not going to happen. Besides, whose common sense?
The pragmatic answer to what needs to happen has three parts. First, simplify regulations. Next, help provide means of accomplishing it that are cheap yet effective with grants and free educational opportunities. and Most importantly, rather than making accessibility an optional thing with lots of loopholes to avoid compliance, make it an expected requirement.
We truly need strong leadership from the executive branch. Throw out the reams of regulations and insist they be understandable by your average 18-year-old. For example, web site accessibility for blind and visually impaired people could be summed up as, "If you wish to do business with or have traffic from any person living within the United States, then your site must work with the top 2 screenreaders and screen magnifiers." How to accomplish that should be taught in web developer classes. For a company that cannot afford to do it now, compliance would be required if any changes are made to the site. Grants would be available to help companies that are struggling.
Think that's too harsh? Okay, fine, companies only need to comply if they plan on doing business with the federal government. I'm sure someone working in New Orleans' Federal building has order something for the office from Walmart's site.
Accessibility has become this massive industry made unnecessarily complicated. Even ordering accessible signage for restrooms is nuts. There are some cute and cheap ways companies could make accessible signage. I believe there must be Braille, high contrast colors, and raised letters of a certain minimum size. With the exception of the Braille, which is not hard to learn by the way, your average 10 year old could probably make such a sign.
I have come to believe the reason accessibility has become such a complicated and convoluted beast is primarily because people want to find a way to avoid doing it. Ever tried to tell an eight-year-old a rule? If you want them to obey it, you put it in a few simple words. The more you say the more they will find a way to wiggle out of compliance.
Finally, consider this. You walk into a store to buy a pack of gum. You, a non-disabled person, assume many things – you will be able to enter and exit the store, the gum will have print identifying it, the sales person will be able to interact with you, and you will be able to identify your own money or be able to use the credit card/ATM machine. How come disabled people have to wonder if they will be able to do these things?

Becoming *That* Person

Flying home Monday, I almost became *that* person – the one who betrays her people by supporting the opposition --the black, gay Republican, the woman supporting lesser pay for members of her gender, or in my case the disabled woman who wanted to tell the other disabled woman to sit down and shut up.
I cannot be certain of the contentious issue because my attention was not snagged until voices were raised an the phrase "violation of the ADA" uttered. We'd left our originating city late because of a mechanical failure, so our layover was abbreviated. Apparently, this woman wanted forty minutes to exit the plane and do something related to her body and the uncomfortable seats. The flight attendant was refusing her request. I found myself agreeing with him. I found myself wanting to defend him.
Superficially, my instinctive response to my fellow traveler made complete sense for the woman's approach was not nice, rational, or designed to educate. It was shrill and slightly offensive. I believe she told the flight attendant that she knew more about the ADA than he did and she hoped he never had a reason to know as much as her. As someone who wants to change for the better how disability is perceived, I object to other disabled people behaving badly.
The ADA was designed to provide reasonable accommodations to people with disabilities so we could fully access anything the general public had entrée to. Over the past 21 years, it has been twisted, stretched, cut, and shredded by our court system into something I doubt even its author's recognize. As it reaches the legal age of drinking, like a new born infant, it's purity and innocence is long gone. In some ways, it's that inmate who was abandoned by its mother, beaten by its father, sent into foster care where it was raped, and then thrown into the real world because the calendar said it was time. I only wish we could send the ADA to rehab, intensive therapy, and if all else fails, lock it away.
Back to my fellow passenger and disabled person. Her request seemed a bit excessive to me. Holding up an entire plane for forty minutes so she could be out of an uncomfortable seat seemed nuts. Asking to be able to walk around the plane, take a later flight, switch seats, or even have two seats to be able to get comfortable would have struck me as reasonable. Instead, she made a radical demand and resorted to insults when denied her request. In the process, she gave everyone within hearing an example of an angry, irrational disabled person. She's why people hesitate to help me thinking I'll yell at them.
Why didn't I say something? I didn't know the entire situation. She could have been in so much pain that her behavior was explicable. It could have been that she spoke to the airline when making her reservation and they weren't holding up their end of some previously negotiated agreement. Without the full picture, I chose to be silent.
All this is to say that sometimes a member of a marginalized group is a complete jerk giving everyone in that group a bad name. Being part of an oppressed population does not instill sanity, wisdom, or righteousness. My disabilities do not grant me an inherent ability to be right more than another person. They do give me markedly more experience making my opinions more than random thoughts. Understanding the difference between "She's disabled so she must be right" and "She's disabled so she must know something I don't" is hard. Understanding that difference is essential to navigating the minefield of opinions held by people within and without a marginalized group. Anyone can have a point. Anyone can be right. Not everyone can know what it is like to be a part of a particular marginalized group. Our experience has value. Our experience does not make us always right.

Where Law Cannot Tred

In any civil rights movement, political activism has a key role. Same sex marriage is only one example of political activism utilized to change laws that will directly benefit individuals. Without political pressure, the American's with Disabilities Act would not have become law, but as so many pointed out on its twentieth anniversary, progress hasn't met expectations. The position people with disabilities inhabit in our society still reflects a second class citizenship where we are not full participants in the greater world. Why?

Disability, as a marginalized group status, is unique for a physical difference and/or "inability" is readily identifiable. In the nineteenth century, we saw how a tangible bodily variation effected societal status. Phrenology – the practice of determining traits such as intelligence based on the size and shape of the human skull – was used to rationalize the oppression of blacks. Today, those physical differences amongst the various races are considered irrelevant. On the other hand, disability is commonly defined as an inability to function in two or more major life areas such as school, work, mobility, and socially. Thus, group membership provides All that is necessary to justify our second class citizenship.

If my status was entirely based upon and solely limited to the fact that I cannot see, I might be willing to accept my position, but this is not the case. Take a moment to really consider this. How, after all, is my intelligence or competency in question simply because I cannot see? A person with a cognitive disability might be limited in terms of intellectual goals. Jobs requiring manual dexterity or physical strength are still legitimate options, yet an entire system of social services agencies exist just to convince employers to hire people with such conditions. What I cannot do has little in common with the beliefs that characterize my social status.

Society takes the inability – a fact – and adds what it perceives to be the implications of that truth. These perceived implications are based on fear, ignorance, and even well-intentioned compassion. Sometimes, as with blindness, it's inaccurate conclusions such as sight is necessary to bake. Other times it's more subconscious, such as fear shaping conclusions. The discomfort felt around a person with Down's Syndrome minimizes a desire for contact and the assumption that the individual has nothing meaningful to contribute because of their intelligence is an easy excuse. Even compassion leads down an erroneous road for often Deaf people are thought not to enjoy music and left out of invitations to go clubbing. (FYI, the base in of loud music can be felt.)

This crucial element of implication in the chain from difference to discrimination cannot be attacked with laws. It is embedded in the minds and hearts of people, perpetuated by what we teach our children, and magnified by a rigid societal structure. (Rather than embracing the idea of ramps, people are physically barred from public spaces, then devalued because they cannot access the places necessary to, say, perform a job. If disabled people are to be freed of their second class citizenship, hearts and minds will need to change.

Consider two pieces earlier published in this blog. You Can't Play gave a list of ways people like me are relegated to a lesser position and very few can be fixed by legislative act. Is There Disablism in Dating? argues that attitudes about disability subtly shape partner preferences. Is Congress going to pass a law that requires people to find me appealing as potential mate?

On the other hand, if we can alter the implication portion of the equation, it will ease the way for legislation or make it less necessary. After all, a law is only needed when people aren't going to do the right thing on their own.

Does this mean I think political activism is pointless? No way. I do believe that shifting how people conceive of disability deserves more effort and attention. WE need spokespeople that immediately pop into American's minds when they think about disability. How many of you know who Judy Heuman is? Justin Dart? Steven Drake? I'm certain Ellen Degeneres and Jesse Jackson are both known to you. Can you even think of someone with a disability who is in the public eye changing how society perceives physical difference?

With this blog, I try to be one of those people, but first someone must stumble upon it. Many disabled folks are doing the exact same thing – using the web to educate. Sooner rather than later, I believe we will reach some critical mass and a few articulate disabled people will emerge from the cyber world into real life. Making use of all the lessons I've had about "positive language" and manifesting what you desire in your life, I'm jus going to put out there that I will be one of those people.

American Citizenship

Yesterday I went to my local polling place and voted. For the first time since 1996, I was unfettered by either pragmatic or attitudinal barriers. It may seem like such a small thing, but it is anything but.

In 1996, I realized my new status as a totally blind person meant I would have problems voting independently, so I began researching what accommodations would be provided. None. I had to fill out my ballot by instructing another on how to complete it. Offending my every sensibility, I refused because I possess a strong belief that how I vote should be between me, myself, and I only shared with those of my choosing at the time of my choosing.

Lawyers were necessary to force implementation of a simple method by which I was easily able to vote. It was also the last time in ten years that it would be possible to have a good experience.

When I moved to California, I researched my options and again found I was denied a secret ballot because of my disability. Like in Massachusetts, I contacted all the right people, but by then laws had clarified my "rights" and a secret ballot was not one of them.

It took the Help Americans Vote Act of 2002 and its requirement that machines be accessible as of January 1, 2007 for me to walk into my polling place and vote privately. Between 1996 and 2007, I remember voting exactly once in the 2004 presidential election. Since 2007, I have voted in all general elections and many primaries.

It may seem like a small thing to have a secret ballot, but anyone with a knowledge of constitutional history is aware that our founding fathers expressly wanted those who voted to do so unfettered by pressure which meant a secret ballot. Unfortunately, it took until 1920 for women to even get the right to vote, 1965 for us to address the issue surrounding blacks voting, and 2007 for disabled people to be able to do it with the same sense of freedom white men have enjoyed for over two hundred and twenty-five years. Collectively America should be ashamed of itself.

As we all know, laws only do part of the job and my voting experiences since 2007 reflect this. My polling place was staffed with the same set of elderly people for about three years. It often took more than two people twenty minutes to set up the machine. After a couple of visits, I was recognized upon sight and if I had missed an election, it elicited comments. This did not give me a sense of privacy. Exercising my right to vote meant excessive waiting, being clucked over by pitying people, and having my voting habits noted.

Yesterday, I had to force myself to walk the several hundred yards to vote. Guess what? There was a staffing change! Nobody acted like they knew me and the machine was ready in under ten minutes accomplished by only one person. It was amazing. For the first time since 1996, I felt good about voting. I had the extremely rare emotion of pride in being an American.

Seriously, why does being a Disabled American mean I feel alienated about 95% of the time? The simple act of voting like everyone else should not be a struggle. Being disabled should not be such a fight. Yet in the United States, especially in these economic times, we collectively live on the edge with unemployment rates that are six times the national average, benefits that are being cut, and the laws designed to force our right to access ignored by the very government that penned them. I know having food on the table of every American comes before my ability to vote comfortably, but neither issue is being addressed instead the debate is over whether or not to increase taxes on the wealthiest 1% of our population.

Can we declare a temporary time out while everyone evaluates their bad behavior and figures out how to do better? It works on four-year-olds.

Our Responsibility?

From my last post http://peoplearentbroken.blogspot.com/2010/08/disability-is-responsibility-of.html, you probably figured out I don't think it's fair to make disability the sole responsibility of the disabled. The why of it might elude you. Disabled people are the ones with the "problems," so shouldn't we be the ones to solve them? They are *are* issues and if we want them addressed making it another person's responsibility seems contrary to, well, everything upon which our culture is built.

I do agree the physical difference is contained within me, but it only becomes disability when I try to function within the society humans have constructed. Eyes were chosen as the method for decoding writing instead of something tactile, which makes me disabled. Our language is auditory, making Deaf people disabled when they try to operate in the broader world. Why is our written language visual? Writing developed when light was harder to acquire than flipping a switch would have made a tactile system useful. Why is our language exclusively auditory? A language of gesture was often used in primitive cultures for hunting.

There is no concrete, simple answer as to why society has developed in the manner it has, but it is nonetheless the society we inhabit. Unfortunately, many of its elements turn difference into disability. How does that make disability the responsibility of the disabled? How can society with one hand make me disabled and with the other hold me responsible for fixing it?

I have been pondering whether other marginalized groups are in the same position. Is racial inequity the responsibility of ethnic minorities? Clearly racism is an artifact of our social fabric that has labeled a given physical difference a marker of inferiority. WE do not expect an ethnic minority to educate an employer or check to make sure they are allowed in a public place. We do hold some expectations that they will fight the system, endure greater expense (groceries in the "ghetto"), and answer questions, but as a society we acknowledge the unfairness of such circumstances. Our insistence is that social expectations and societal structures shift to become fair.

Except, of course, when it comes to disability. I hold two elements of our social fabric responsible for this. The pioneer pull yourself up by your bootstraps mentality has so shaped our thinking that we almost automatically look for how an individual is to blame for their plight. Didn't get an A on a math test? It's not because the previous evening your father was beating your mother and you couldn't sleep. No, you didn't study hard enough. Can't walk up that flight of stairs? Well obviously it is your fault because you are the paraplegic so you figure it out. Viewed in this simplistic way, it seems patently absurd to make the person who can't walk up the stairs in charge of the problem. Unable to morph stairs into a ramp, they can only turn away from their goal.

I also believe our social norms about appearance and behavior play a role. WE think people should look a certain way. We think they should act in a particular manner. And when they don't? Wow. Everything about life becomes a little bit harder and that is considered perfectly acceptable. So when a disabled person comes along who may be different in manner or appearance and need unusual things, it falls into a similar category. It's their difference and their problem to solve or not solve.

Legislation attempts to address societal inequities related to disability and has somewhat reallocated responsibility. Unfortunately, although the ADA is twenty years old, it has not changed the minds and hearts of individuals let alone our society's nature. Even the language of the law mandating "reasonable accommodations" unless there is an "undue burden" makes disability equity something to work towards not a concrete benchmark that must be met.

Perhaps the societal shift of responsibility will take more time for the Civil Rights Act of 1965 is twenty-five years older than the ADA. Possibly in 2035 I will not live in a society that finds it acceptable to make me responsible for a physical difference I did not choose. As a sprightly sixty-three-year-old, I am certain it will radically alter my experience.

Wow in a Bad Way

A case of "You can't play" has come to my attention that is so glaringly wrong I feel compelled to post about it here. In addition, I have a personal connection because of the college in question and the disability awareness work I did in Amherst, Massachusetts.

Mout Holyoke College (MHC), located in South Hadley, Mass, is one of the Seven Sisters as is Vassar College, my alma mater. Back when schools like Yale, Harvard, and Amherst college were exclusively male, the Seven Sisters evolved into the female counterpart of these universities. In point of fact, I believe MHC is the oldest female college in the country. It is also part of a five college network composed of Smith College, Amherst College, Hampshire College, and Umass Amherst. Thus my disability rights work brought me in contact with MHC students.

A friend pointed me at a blog written by a MHC student who tells us about her first year on the campus through the eyes of her service animal Holden. Dog in the Dorm As she bemoans in this blog, it was meant to be a light-hearted way to keep people up to date on her life. Unfortunately, MHC has behaved so badly that it became a chronicle of her frustrations and struggles. In reading it, you can even tell how hard she endeavors to keep things light in the face of what I categorize as "WE want you gone yesterday" behavior.

This student has a mobility impairment and a chronic health condition, so of course they put her on the third floor of a dorm with several heavy fire doors to open either coming or going. Her room was so small she had to park her scooter in the lobby so anyone could mess with it. It took them until the spring semester to move her to an appropriate room, but it seems problems still exist. When she took her service animal to the various dining halls, she was denied admission. This lasted more than two months until the school finally agreed to post signs with the service animal policy clearly stated at all dining facilities. I could go on, but really she tells it better.

You would think that such a prestigious school originally founded to provide equal educational opportunities to women would know better. You would think that almost 20 years after the signing of the Americans with Disabilities Act would make such behavior extinct. Nope. Here's the worst part: She's not alone.

Apparently, other MHC students are routinely experiencing similar problems and are unable to resolve them. The student with the blog has retained counsel and things are changing for her, but what about the other students?

I wanted to do my part to bring MHC's behavior to people's attention. While I wish MHC was the only institution of higher education behaving in this manner, it is not. I scanned my own college's website and discovered as recently as 2008 students with disabilities were experiencing trouble getting what they needed. I am certain it is happening at other schools as well. I also know there must be schools doing it right, right?