Tag Archives: disability rights

Disability Rights California

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In January of 2014, a friend said, “Hey, maybe you should apply to be on this board I’m on.” The moment I discovered what it meant to be on the board of Disability rights California http://www.disabilityrightsca.org/, I knew this was the thing I’d been aiming to do my entire life, even if I didn’t know it existed. It was just that right for me.

What made it so perfect? Most of my life, I’ve changed how people thought about disability one person at a time. It was boots-on-the-ground type work, where I was up close and personal with the lives impacted, but I could only change small things, one at a time. Being on a board meant determining broader policies that could change the lives of people I would never meet, advancing the rights of individuals with disabilities on a scale only ever in my dreams.

For two-and-a-half years, I have been on DRC’s board, looking at the big picture. Exposure to other disabilities has increased my overall disability knowledge, but that isn’t really where I’ve expanded my skills. I’ve learned I can look at a balance sheet and more or less understand it. I’ve discovered my inner data geek. I’ve even learned I am good at press interviews. Weirdly good at them.

I tell you all this for a couple of reasons. First, if you are a person with a disability, looking for something meaningful to do with your life, check out your state’s Protection and Advocacy organization, which is the role DRC fills in California. Unlike most other volunteer opportunities, your disability will not get you turned away. Instead, your experience will be valued. Reasonable accommodations, given because you expressed your need instead of fighting a battle, will feel almost luxurious. Finding out that a data geek lurks in your soul is the cheery on the cake.

Second, in my time on the board, I’ve learned nobody knows about Protection and Advocacy organizations (P&A), what they do, or why they exist. Until I joined the board, I didn’t know about P&As. They are mandated by federal statute to fight for the rights of people with disabilities in various categories. The first such statute came about because of ground-breaking work by, believe it or not, Geraldo Rivera back in the 1970s when he smuggled a camera into Willowbrook State School on Staton Island. He captured the country’s attention and outrage when he showed the conditions people with intellectual and developmental disabilities were forced to endure.  As a direct result of this story, the federal government establish the P&A system. Over the years, further funding has been designated to work with other disability populations and on specific topics, such as the Protection and Advocacy for Voting Access.

DRC and other P&As do everything from offering information and referrals to filing individual and class action lawsuits. The ultimate goal is to allow people with disabilities to live, work and play where and how they wish. It’s a tall order carried out by dedicated people every day. I’m lucky enough to be on the board and help decide what the future should look like for people with disabilities.

In January of 2014, a friend said, “Hey, maybe you should apply to be on this board I’m on.” The moment I discovered what it meant to be on the board of Disability rights California http://www.disabilityrightsca.org/, I knew this was the thing I’d been aiming for my entire life, even if I didn’t know it existed. It was just that right for me.

What made it so perfect? Most of my life, I’ve changed how people thought about disability one person at a time. It was boots-on-the-ground type work, where I was up close and personal with the lives impacted, but I could only change small things, one at a time. Being on a board meant determining broader policies that could change the lives of people I would never meet,advancing the rights of individuals with disabilities on a scale only ever in my dreams.

In case you somehow managed to miss it, I love metaphors and similes a wee bit more than is reasonable. In the world of non-profit activism, a board sets a trip’s destination and gives basic parameters, like method of transportation, how much it should cost and how long it should take. An Executive Director takes those “marching orders” and decides the departure time, arrival time, route to take and brings the plan to life. Staff packs the suitcases, fuels the trucks, gets the supplies and makes the trip really happen.

For two-and-a-half years, I have been on DRC’s board, lookking at the big picture. Exposure to other disabilities has increased my overall disability knowledge, but that isn’t really where I’ve expanded my skills. I’ve learned I can look at a balance sheet and more or less understand it. I’ve discovered my inner data geek. I’ve even learned I am good at press interviews. Weirdly good at them.

I tell you all this for a couple of reasons. First, if you are a person with a disability, looking for something meaningful to do with your life, check out your state’s Protection and Advocacy organization, which is the role DRC fills in California. Unlike most other volunteer opportunities, your disability will not get you turned away. Instead, your experience will be valued. Reasonable acccommodations, given because you expressed your need instead of fighting a battle, will feel almost luxurious. Finding out that a data geek llerks in your soul is the cheery on the cake.

Second, in my time on the board, I”ve learned nobody knows about Protection and Advocacy organizations (P&A), what they do, or why they exxist. Until I joined the board, I didn’t know about P&As. They are mandated by federal statute to fight for the rights of people with disabilities in various categories. The first such statute came about because of ground-breaking work by, believe it or not, Geraldo Rivera back in the 1970s when he smuggled a camera into Willowbrook State School on Staton Island. He captured the country’s attention and outrage when he showed the conditions people with intellectual disabilities were forced to endure.  As a direct result of this story, the federal government establish the P&A system. Over the years, further funding has been designated to work with other disability populaations and on specific topics, such as the Protection and Advocacy for Voting Access.

DRC and other P&As do everything from offering information and referrals to filing individual and class action lawsuits. The ultimate goal is to allow people with disabilities to live, work and play where they wish. It’s a tall order carried out by dedicated people every day. I’m lucky enough to be on the board and help decide what the future should look like for people with disabilities.

CripFace

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No, it’s not some unusual facial expression that people with disabilities have nor is it a reference to an outer layer or surface. Think blackface, popularized in the 19th century as a means for white actors to portray people of color in theatrical performances by using makeup to blacken their faces, as well as wearing specific costumes and adopting certain mannerisms.

The term cripface has gained popularity as a means to refer to actors without visible disabilities who play characters with visible disabilities. Obviously, it is meant as a condemnation of the practice by those who find it insulting, disempowering and marginalizing.

Hollywood has a tendency to use actors without visible disabilities to play parts calling for a visibly disabled character. The practice is so common that, except in the case of Michael J. Fox or Marley Matlin, you can more or less assume a character with a disability does not have that disability in the real world. (“Growing Up Fisher”, “Joan of Arcadia”, “Riding the Bus with My Sister”, “The Piano”, “My Left Foot” etc.) In fact, chances are you can name more characters with disabilities than you can actors with disabilities.

The reason this happens is a chicken and egg explanation. Actors with disabilities are not cast in roles, unless the character specifically has a similar disability, so they do not get a lot of work. This means they have trouble gaining enough industry admiration to be cast in roles that include a disability. Instead, established talents with name recognition are sought to play characters with disabilities.

The practice is complicated by the fact that disability is often still utilized as plot devices to elicit certain responses from the audience, based on stereotypes and reliant upon inaccurate distortions of what it means to live with a disability. There are not strong, happy characters who happen to have disabilities filling the pages of novels or wheeling across the silver screen. If disability is a characteristic, it is a noted trait given significant attention and composing a major part of the plot because no creative gains would be made by a character with a disability who is “normal.” And, of course, if you have a character with a visible disability, that disability must somehow advance the plot. Thus, there are villains with scars, paraplegics bravely shouldering the tragedy of their situation and blind lawyers who made it through law school without anyone realizing they were blind. (It’s a major plot point in “Growing Up Fisher” and also impossible.)

Interestingly, blackface is attributed with both the proliferation of harmful stereotypes and bringing African-American culture into the mainstream. More than fifty years after the practice faded from the spotlight, the stereotypes blackface perpetuated are alive and well in our society, clearly demonstrating the harm the practice caused. Yet, there is no way to know what benefits the practice may have propagated, such as influences on music.

Proponents of casting people without disabilities in roles calling for disability often argue that at least characters with disabilities raise the public awareness of the existence of disability. Whether accurate or not, mainstream society is being exposed and how can exposure be bad?

Personally, I am not a fan of cripface when it does nothing to advance an accurate portrayal of disability. There’s no reason, other than actual storyline, to make a villain scarred, unless you are relying upon a noxious stereotype about ugly meaning evil, so don’t do it. However, if a role is based on a realistic portrayal, then anyone should be able to play the role. And, of course, the opposite should hold true. An actor with a disability should be able to play a role that does not specifically call for a disability. Why can’t a wheelchair user be an extra? For that matter, why couldn’t a “Gray’s Anatomy” patient have a prosthetic limb without it being a plot point? When disability is reduced to a characteristic that some characters have and some do not, that sometimes is relevant to the plot and sometimes is not and that doesn’t get an actor included or excluded from a role, then I won’t have a problem with cripface because it will no longer be a noteworthy event. It’s only a problem when prejudice, stereotypes and bigotry hold sway over Hollywood instead of a more balanced view of another facet of human variation.

 

This entry was written as my contribution to Blogging Against Disablism Day 2015. For some interesting reading, check out what others have contributed!

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

The Cost of Safety?

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I signed up for a free class at my local Braille Institute (BI) and received a letter informing me of a new policy.  I will be required to wear a print name badge with colored lanyard – green for student, blue for staff and red for volunteer.  I loath and typically refuse to use name tags in any form because they grant sighted people a social advantage.  I was indignant that an organization serving blind and visually impaired individuals would require me to do this detestable thing.  Of course I marched into an administrative office and expressed my discontent which began what I hope is a dialogue leading to policy change.

BI has reasonable concerns about security heightened by the 2012 shooting at Sandy Hook Elementary School.  They want a means to identify who is allowed on campus versus who might be unauthorized in order to prevent tragedy.  Additionally, there are concerns about identifying people in a disaster situation.  By displaying name and status, they can know who should be present which will keep everyone safe.

Another reason given involved promoting social interaction by allowing names to be known.  In fact, some students have been asking for name tags.  (An excellent example of how people with the same disability can have drastically different preferences.)

Indeed, name tags are a great social lubricant.  Aside from the pragmatic benefits to name recall, people can also address each other by name, granting an essence of friendliness and familiarity to conversations.  Not being able to read name tags denies someone all this social ease.

Blind people are already at a social disadvantage because of society’s eye contact and body language heavy communication patterns.  Heaping more disadvantage onto that is suboptimal and unnecessary.  Though we might not be able to make our culture suddenly cease utilizing visual communication, we can at least not bless sighted people with more social advantage while compounding the amount of social disadvantage blind people shoulder.

Furthermore, because a blind person is forced to repeatedly ask for names, their difference is emphasized in a way that highlights an inability.  It becomes yet one more thing I cannot do that I must broadcast each time I ask for a name. Even in a blind and visually impaired population, a division will still be demarcated between those who can see enough to read the name tags and those of us who cannot.  Advantage for some, disadvantage for others.

Some argue that even if I cannot read other’s name tags, their ability to read mine allows them to overcome communication barriers by giving them a name by which to gain my attention.  Unfortunately, when I have capitulated to the demand of labeling myself, I have noticed no increased social engagement.  And I use the word “label” specifically because putting on that piece of paper doesn’t just give my name, it makes my disability larger than it already looms.

This leads to my second objection – color coding people into the categories of staff, volunteer and student.  In and of itself, color coding can be highly useful as evidence by sports teams, hospital I.D. bracelets and summer camps the world over.  We do not, however, put all the kids in need of special reading help in red shirts, require anyone over age 55 to wear a silver armband or demand people with a specific disability wear a sign.

It is an unavoidable truth that in this situation denoting student status inevitably and accurately indicates disability status.  Because people with disabilities are a protected class known to experience discrimination and violence solely based upon that status, we should not be literally marked as such.

Furthermore, in terms of safety, anyone labeled blind by color or the word student becomes that much more vulnerable.  Who better to victimize than a person you know will have trouble seeing you?  Thus, marking me as a student clearly identifies me as the ideal target.

I understand and support the idea of having a means to know who should and should not be on BI’s premises.  I also recognize the unfortunate necessity for people to carry some sort of I.D. in case of medical emergency or body identification.  I believe there are means to address these concerns without utilizing problematic tools.  Insisting all students carry identification is a place to start.  Having badges with our pictures allows face and photo to be matched which is far less able to be forged than a  simple name.  An I.D. number would help in case of emergency.  A print name could be included if the student requests it.

As for color coding and other means of indicating student status?  There is no methodology that would allow for it because student equals person with a visual impairment.  Besides, what security goals are met by sorting people into the three groups?

Others have voiced additional concerns related to this policy.  Campus vulnerabilities exist that will not be addressed, including no means to detect dangerous items on someone’s person, lack of techniques to minimize congregation of students as they are loading and unloading busses and any means for a blind student to know who should and should not be on campus.  Even lanyards represent a safety risk because they can be caught or grabbed tightening around someone’s neck.

Before turning to safety procedures that create social barriers, highlight difference in a negative way and clearly mark a protected class of individuals, I urge BI’s decision makers to look outside the typical security toolbox to solutions that meet the needs of the unique population they serve.  I appreciate being kept safe, but please don’t force me to pay these avoidable costs for that security.

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