Tag Archives: access

What Is Help?

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Here is some food for thought. Uncertain what street I am on, I will stop and ask someone. This is categorized as asking for help. Uncertain about what street they are on, a sighted person looks up and reads the street sign. We do not call this help.

A street sign does not magically appear suspended above our heads. It was ordered, made and hung there to aid people navigationally. However, if you can read it with your eyes, the effort behind and purpose for the sign’s presence is stripped away. You are functioning independently by reading information that is just there.

Why?

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.

Please Pass the Butter

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Imagine this: You are sitting at the table, enjoying a meal at a friend’s home. There is a lovely muffin on your plate that would be fabulous with butter. Nobody has yet mentioned the existence of butter and without being able to see, you have no idea if it is on the table or not.

If you ask and it is not there, then somebody will jump up to retrieve it. As much as you’d like the butter, you don’t want to inconvenience anyone.

This dilemma happens to me all the time. I hate the feeling of not knowing if I’m requesting something that will take a moment to passs or will cause drama to locate.

The situation is not limited to food and meals. At the moment, I am trying to figure out how to determine if my yoga studeo has a community board where I can post a flyer. Should I ask and it not exist, the staff is the sort to go to excessive lengths to somehow make an exception or create one or something. Given that I don’t want that, how do I ask to gain information without spurring anyone to excessive lengths?

WHAT WE MISS

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In “Flowers for AlgernON,” Charlie Gordon, a man with a cognitive disability, undergoes a procedure that triples his I.Q., only for the experiment to ultimately fail, resulting in a return to his initial level of cognitive functioning. I am reading a novel in which a character with Aspberger’s Syndrome declares Charlie “stupid” for doing it in the first place because “now he knows what he’s missing.”

People born with a disability never experience life without the physiological limitations of their condition and common wisdom is that they never know what has been lost. While I agree they never know what they lack in terms of being sighted or neurotypical or hearing or possessing all limbs or whatever, I would argue that there is a vast amount being missed that such individuals are clearly, concretely and excruciatingly aware is not present – the social perks of normalcy.

Think about this for a moment. People with invisible disabilities – ones not known to others unless they are specifically told — struggle over whether or not to reveal their condition. Why? It cannot be because of the limits of their condition for those are present no matter what. Rather, it is about how others will respond to the new information. It’s about social consequences of possessing the trait of disability.

Anyone with a disability at some point watches those without a disability as they move through life. It’s on our televisions, in our books, on the bus and even in our own families. Non-disabled people are granted an ease in living from social interactions to dating to becoming a parent to joining a group, all because they do not possess a specific trait. They have done nothing to “deserve” this effortlessness nor do they usually realize its presence. It’s expected, counted upon and presumed to never be different.

Meanwhile, people with disabilities tend to live a different sort of life. All that ease and freedom and smooth sailing is denied them not because of the functional limitations of their condition but because of the existence of the condition.

And we know what we are missing. Though we might eventually reach the same destination, the journey will not be the same.

And we will watch people no better or worse than ourselves enjoy social lubrication we can never experience.

And it will be because we possess a trait. It will not be because of the consequences of the trait. It will be the mere presence of it.

Forever, we will be on the outside looking in. Forever, we will know what we are missing.

What I cannot enjoy because of the limits of my visual abilities is an insignificant fraction of what I know I am missing. If I could secretly see everything without anyone ever knowing it – if I acted blind though I could see – I would not feel like I suddenly gained some lost thing. What I will forever miss has nothing to do with not seeing and everything to do with what I do not receive because of blindness’s simple presence.

Here’s the best way I can explain it to non-disabled people:
It is the bar of amazing chocolate on a shelf high above your head that you are unable to reach. Meanwhile, many other people come by, take down the bar of awesomeness, have a piece they devour before you with obvious enjoyment and then replace the bar again beyond your ability to grasp. Over and over again. Your entire life. Maybe with a tiny nibble just often enough so you can never possibly forget the delicious flavor.

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.]

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?