A Pause to Discuss Disability Advocacy

You would think that as a woman and as an “African-American” (we are all Americans so I hate the additional identifiers – I simply find it is necessary to discuss this point), I would understand more about the idea of Civil Rights. After all, these two groups alone have faced the sting of discrimination and injustice since the birth of America. But I, like many Americans grew complacent about Civil Rights. We had some laws passed, a few people got some jobs, there were options out there that we did not have before.  And to be quite honest, I sometimes found myself very frustrated by those people who seemed “bitter/angry” all the time. You know that person who could not have a single lunch without bringing up this cause or that cause. It was overwhelming for me.

I could never quite understand why that was. Why would someone speaking out etch through me like glass?  This week (I’m now 42 years old), and only this week did it dawn on me!  My entire life I was told to stop complaining. To learn to accept “something”, to be happy with what I had. We were poor, after all. We had to learn to be grateful. We had shoes and some kids did not. We had food some kids did not. We had a home and other children lived on the streets or in shelters. I might have still felt hungry, but I had something – so stop complaining.

Were those things valid concerns, yes, but since my grandmother had no power to make any changes to our lives, she had to teach us to deal with it, to find happiness and to not focus solely on what was not there. There is value in that philosophy and I don’t want anyone reading this post to think that I find shame in that. The shame is not being poor and not having something. The shame is being made to believe that you do not deserve better. It was not my grandmother who taught me that – it was society, teachers, people who said things like “You can’t learn”, “You are stupid”, “You should not try for better because you are not going to get it.” That shaped me in such a deep way that  I presumed that saying it, claiming it and asking for help was complaining.

I remember always making excuses for others, when I would say something, write something, or have difficulty getting the words out. Often those excuses where demeaning to me. I could not articulate what I felt and so I found that the easiest way to cope was to do my best to blend in and pretend like nothing was wrong.

I chuckled when people I loved called me “weird” even though it hurt me inside to hear it. I tried to let it go when I heard words like, “off in her own world” or when people would whistle and spin their fingers in a circle around their temples. Everyone has to learn to laugh at themselves (I would justify) – I should have a bit a of humor about myself, so that I can learn how to blend in with the world around me.

But there were some underlying differences that no one was really looking at. I WAS NOT just like every body else. Everyone else was walking into a public school and making the choice to learn or not learn. I was walking in knowing that nothing I did that day was going to stick. Everyone else had the option to go to the library and grab information and use it to better themselves. I walked into that same library knowing that I was going to loose much of what I read.  When our student body graduated from high school most of the students (even if they were scared) had memory of the information they had learned in school – had recall of the faces of people they had met. I left school with no recall of anything that took place in the classroom and limited to no memory of the faces of the students or teachers I had met there. There was a difference – there was a problem – there was something missing.

No one was going to be able to speak that space but me. Everyone else around me thought (because I had pretended) that we had the same access to the same things because it was a free American right. They had no idea that due to my learning issues I was not able to access that free “Right”.

I also remember the attitude people got when at the mere mentioned the term “accommodation”. It would cause an immediate anger. So many people felt like something was being taken away from them because another person dared to say something as simple as, “I need assistance with this/that.”  The problem is that it is very difficult to understand when you have never lived it. To live a life free of the need of accommodation is something I will never experience. That does not mean that all people who do are bad or unfeeling, it only means they are different. I just don’t know anyone totally free of some type of accommodations. Every short person needs a stool. Most tall people need special clothing. Children need special caps placed on medication. I see accommodation everywhere I turn – why do we make it into a four letter word?

The need for accommodation is further complicated by something else. The misunderstanding that disabilities are something new that people are coming up with so they don’t have to work or so that they can get something from the government for free or so that they can get special treatment.

I try to address those things systematically. Disabilities have always been apart of the living experience. Unfortunately, for those with physical disabilities the consequence of having the disability was often a death sentence, this was no different then what happened to the elderly who by nature of becoming older became disabled. For those with intellectual or cognitive disabilities this meant being shut in institutions or “sheltered” by families who were embarrassed. Or it meant that you would have needed to be exceptional or ridiculed your entire life by society – a hero or a misfit.  But no matter what, this left a great deal of “healthy” non-disabled individuals to build an entire society without your input and for your “benefit”, unaware of your needs because you were too “crippled” or too “ignorant” to contribute.

I was on a discussion board this week.  We were discussing what people in the “disability community” needed to do in order to start truly advocating for themselves. In the discussion some brought up that people who have disability need to do many things, like speak up for themselves, participate in boards, write letters, inform/educate our greater community, talk to legislators, etc. I then remember this gentleman saying that we did not need to be on boards, not even the boards of programs that were designed to help our community.  He could not understand why this would be of any value to help with any form of change.

This person was not being mean, but this person did not understand  a very basic concept. That concept is that sometimes the thing done to help can cause the most hurt. For that reason I shared a story that was far more intimate. It was my hope that this story would help shed a little light on why people with disabilities are hurt when we are not apart of our own solutions. The example is not disability related, but it is just as valid, which is why I share it now.

A few years back I had an emergency hysterectomy. I checked in on the ground floor and woke up in maternity. I can’t tell you how hard it was to wake up to hear children crying knowing about my own loss. When I asked why they keep women in my situation on this floor, I was told it was easier on the doctors. It had been determined by a vote of a hospital board. If just one of those board members had understood the patient’s side they might have realized the trauma of this choice. Sadly the board that made the choice that impacted me had no idea of the ramifications this choice would have on me psychologically speaking. They only knew that they had done what they could to help me. I will never be angry that they helped me. That does not change what happened to me after. Had one person been there to explain that placing women on this floor was a horrible idea – maybe that would have had an impact – I will never know – but it will never change if women remain silent about that kind of issue.

Many people do not realize how the things they think of as normal are damaging to someone with a disability.  Take for instance, the buses in my state are now equipped with a wheelchair lift so people in wheelchairs can get on the bus. I was at a meeting with a group of people who are in wheelchairs. On this day it was snowing. I was upset because I had difficulty with my directions, but the snow on the street had been shoveled. I had to drive up one street and down another and when I finally parked I had a puddle in front of me and I could easily jump over it to get to a dryer piece of land. One of the lady’s in a chair then explained that due to the snow the bus driver put her out closer to the highway, so she had to navigate in her chair in the street because the snow had been shoveled so high to one side that her access to the sidewalk had been cut off.  This forced her to go way out of her way to get to the building we were meeting at.

Had I not heard her side, I would not have been able to understand how difficult it was for her. We should have both had access to the street and the sidewalk – we both pay the taxes that make the side walk available for all people, but the city was considering the non-disabled walkers and drivers on that day – they had forgotten about everyone else. I am not just talking about people in chairs, I am also thinking about children, the elderly, and those who have some kind of ailment. All of these people who had to get off a bus and find a new path through the streets, and had to be placed in a dangerous situation. That is unacceptable.

The same way we pay taxes for public transportation and clean sidewalks near bus stops and city buildings, is the same way we all pay taxes to be educated, but most people with learning and other disabilities pay far more because the educational system is created based on building success in students who do not have learning/cognitive disabilities. These additional costs come in the form of extra tutoring, additional supplies, special equipment, etc. Things I have often heard people without out disabilities refer to as “options”.  Not a bad word, but it can be so degrading when used by some. If I cannot be educated without it – it is not an option. If I took all the pencils and paper out of the school and refused to allow students to have the lights on – I would be denying them access – that is no different then the accommodations needed for someone with a disability. I cannot learn if I cannot see, I cannot learn if I cannot get my wheelchair into the room, I cannot learn if I cannot hear, and I cannot learn if the curriculum has shut me out.

A Civil Right is a right we as a people have determined that all of us can have. It is a set of agreements that we hold to that state that we all deserve to have the same things, life, liberty, and the pursuit of happiness. What we forget is that there are some who are unable to participate. We don’t understand that, based on how we have designed our America, we have shut them out.

There are a plethora of issues that the disability community will have to face. We will have to tackle accessibility on all levels, education, homelessness, age issues, housing, insurance, poverty (we are the poorest minority group in America: http://www.census.gov/prod/2011pubs/p60-239.pdf) and the stigma that society holds of us as a disabled community.

The fight for disability rights is not a fight to take something from other Americans, but a demand to have exactly what you already have. We don’t hate people without disabilities, we don’t want to see them suffer and we don’t blame them for the limitations that we deal with every day. We want the same things you want. We want to learn, to have jobs, to ride buses, to enjoy the parks. We want to get work, support our families, help our government, and live the best life we can.  We press because we have been excluded, we press because things are not equal.

One day this will not be necessary – until then we will continue to fight. This is no different then the challenge I take on as an African-American or as a Woman – we have come so far, but we are still so far away.

Until Next Time,

Dr. Richmond

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