In 2005 there are some stark realities facing the disability community. The system in which we find ourselves will not change until we do. The system and the government whether federal, state or local does not owe us anything. We owe ourselves a life that has the quality we want in it. We need to pursue lives that include the right to a life of quality healthcare, equality in the job market, access to affordable housing and a life that is happy.
We live in the richest country on the planet Earth in a republic that speaks of freedom but denies that freedom to those who do not fit the mold. The history of the disability movement is filled with many moments that have advanced and improved the quality of life for people with disabilities. It is time to change the attitudes first of the disabled community and then the population at large.
Is this just another call to action? Have we not heard this before? I suspect that is true but unless we decide to change the way we perceive ourselves the world may never really get to know us. If they do not know us, how can they have the necessary knowledge of how to treat us?
Have you ever felt like a stranger in a strange land? Out of place although you know in your heart, soul and mind that you are as human as anyone else on the planet? Yet, the message you get from those you meet and the community at large is that there is something different about you. Truly, there is something different about you and me. We are living with a disability.
The governmental system that is supposed to assist us is filled with so many rules that you need a PHD. in order to understand them. If you think that is an overstatement I would defy you to understand the rules pertaining to SSI and SSDI and provide a simplified explanation that the rest of us could understand. There are federal, national, state level organizations with the intent of helping people with disabilities live a better quality of life.
Yet, it seems we cannot find affordable, accessible housing without being on a waiting list for lengthy periods of time. Employment for those of us who are able is a path fraught with peril and may cost us the health benefits that are critical to our continued life. Medical care depends on a system that consistently is cutting benefits. How good is the medical care when dental care and vision care are excluded? A mouth of full of cavities or abscessed teeth can lead to life threatening infections, yet, it is not covered and those who live on a fixed income are expected to have the money to cover these expenses. Have the geniuses who set up the system ever tried living on a fixed income?
With all of these systems designed to help people with disabilities why is it so hard in 2005? There are competing priorities for government programs and funds. Do we believe th at our qu
ality of life is a priority? What are we willing to do to insure that our priorities are met? Will we wait for the next funding crisis to protest? Will we wait for the system or will we make the effort to see the system transformed in a system that is simple and serves our needs as taxpayers and citizens of this country? It is high time to stop believing that we are entitled to anything. It is high time to demand what every citizen of America deserves: “the right to life, liberty and the pursuit of happiness.”
Our voices are critical to the discussion. If we continue to allow the system to tell us how we will be served, there will be little service that improves the quality of our lives. Sustaining a poverty level existence in the richest country in the world does not make sense.
What exactly are we discussing?
A system that has true incentives for returning to work for those with disabilities, incentives for employers to hire disabled workers and health care program that insures that health care will not be lost when returning to work. A system with long term incentives for employers 3-5 years of tax credits for hiring employees with disabilities provided the jobs are truly competitive and not just make work jobs at minimum wage. A system that provides people with disabilities that opportunity to accumulate assets in a tiered progression. As assets are accumulated the person assumes some of the costs associated with health care, housing and other necessities of life.
Transforming the system with our input will require a sustained multi-year program of lobbying, letter writing and voting to insure that legislatures have representatives who understand our point of view. We are looking for allies. This does not have to be an adversarial relationship.
It is high time to let the larger society know some pertinent facts about disability in America in 2005:
1) There are NO volunteers to be disabled. Some people are born with disabilities, others acquire during their life due to illness, injury or accident. In every case the people did not volunteer or choose to be disabled. IT OCCURS AS A NATURAL PART OF LIVING. Disability is a part of life.
2) People with disabilities are capable and talented. Allowing their talents to manifest may take an effort that may appear incredible. Yet, every single human being has gifts to share. To share our gifts provides meaning and joy in our lives.
3) Employers should be educated to presume competence in all people. A disability may require some adaptation which can be directed by the person with a disability. Employers who claim to be diverse should be able to prove it. The value of diversity is enormous. We need to continue to prove the value of diversity.
4) We are the experts in disability since we live with it everyday. It is interesting to see how many agencies which claim to be working in our interests, who have few or no people with disabilities on their staff. It is interesting to see governmental agencies who claim to serve us with few or no employees with disabilities. It is interesting to see manufacturers who claim to serve our needs who have neither disabled consultants or disabled staff members who can provide critical input into the development of products so that they are practical and useable for the customers they serve. It is interesting to see how Hollywood will portray disabled people without using disabled people as consultants or to allow a disabled person to portray the character. Why are those Hollywood folks who have acquired disabilities not lobbying for others to be included in the process? Why is it OK for an actor to portray a person with a disability with no consultation and only artistic license as their background? It is time to ask for the right to participate in these areas. It is time to represent ourselves and demonstrate what we can do.
5) Living with a disability is a daily challenge. This requires us to be the teachers of the world in what it takes for us to live with our disability.
Transforming the system will take a change in our attitudes towards ourselves. We must learn to accept each other. Every disability carries the same kind of uniqueness that individual people carry. Each of us has a uniqueness that we acquired at birth. That uniqueness has been given a boost with the acquisition of a disability. That uniqueness comes with gifts that are ours alone. It is not in our best interest to remain passive or believe that the system is our enemy. We need to become active agents of our own destiny. We need to be more than inspirations to other people or people who feel we have been victimized by our circumstances.
This is not just a feel good pat on the back. This is a call for each person with a disability to take a hard look at their own attitudes. Unless we change our attitudes the society will continue to treat us as they have. Advocacy is a beginning but look to yourself as the first line of advocacy. Enlist others when the situation requires it but become confident in your own abilities. Who knows your situation better than you? NO one does and you know that.
When you are confronted with prejudice, ignorance or downright rudeness decide what you can do about it. We are the largest single minority in America right now. We need to support each other and find ways to reach common goals: affordable housing, reasonable and available transportation and competitive employment opportunities. Our attitudes determine what will happen. If we remain passive, the status quo will certainly bury us sometime in the future.
Changing attitudes starts with each of us. We need to remember our own humanity and practice compassion with each other and those we meet. It is possible to change prevailing attitudes but it will require a vision and years of hard work. The world often looks at a person with a disability asking: what can you do? A better question is: what is there that I cannot do?
Yes, we have limitations but we know them and we can articulate them rather than having other people assume that because I cannot see or walk that I cannot do certain things. Yes, there are things that we cannot do but we should be given the courtesy of presuming that we are able to accomplish a task or at least asked if we can accomplish the task.
Let us for a moment look at the accomplishments of people with disabilities: Zoe Klopowitz has completed 18 New York Marathons on arm crutches, Eric Weihenmayer who happens to be blind has climbed the seven tallest mountains in the world, there are many people with disabilities who are lawyers, there is a blind man who is a doctor. Do these accomplishments take a bit more time? Yes, they do. They demonstrate that anything is possible. ANYTHING IS POSSIBLE? Yes, it is. Do not for a single moment doubt that.
As our attitudes change our behavior will change. Our interactions with the society at large will provide a new paradigm. If we create the paradigm, we control our destiny. For far too long we have allowed the world to tell us how we should behave as people with disabilities. We are people with feelings, needs, dreams and hopes. Give us the same opportunities to live our lives as the rest of the society has. In some cases there may assistance that is over and beyond but when we blossom the field of flowers has the most beautiful array that has ever been seen.
Our behavior needs to be the active involvement of activists who are dedicated to the most important we have ever engaged in for the truth is this is about our lives. Do you want a better life? WORK for it. Use whatever resources you have to work for the world.
We have the power to transform the American society. Our vision can only be formulated with the involvement of the 54 million of us being catalysts for education, action and transformation.
This is the beginning.