About Disability
The following is from a transcript of a talk given by Marsha Saxton, then International Liberation Reference Person for People with Disabilities, at a recent Elders and Disability Workshop led by Marsha and Jerry Ann Yoder, the International Liberation Reference Person for Elders.
Disability is difficult. It affects our lives in big ways. I was born with a disability called spina bifida. I started learning about disability oppression as a baby. I decided to make disability liberation my life’s work when I was two years old.
Early humans had a rough time. There were many hardships. Some of our ancestors followed the herds. They sometimes had to leave people behind. What a wrenching decision! They were just like us. They had our emotions. They were us! They had to leave behind an elder with a disability, a baby whose body had something different about it, an injured person who had been attacked by a wild animal. They had to follow the herds, and they had no vehicles. There was no way to bring the disabled people.
Disability oppression is based on the restimulation of early hurts. We all expected to be treated well when we were born—it is built into our DNA! We expected to be held almost all the time (not put into cribs), but we were made confused about our need for connection, closeness, nurturance, physical attention, and discharge. So now when disability happens to us or to others, we are often confused about how to deal with it. Someone with a disability, someone needing something, can restimulate the early experiences. It can seem that the person is a burden, that it costs too much to be helpful.
In our earliest years we are expected to be independent—to be a “big girl,” to do it by ourselves. This is true especially in the Western-dominant cultures. If we have disabilities, we are made to feel like a burden. We feel bad that we cause problems for other people. If we don’t have disabilities, we still internalize the oppression. We hear the messages, and if we acquire a disability later, the messages are in there. We feel like we are one of “them,” which we had tried not to be. The messages are horrible: “We shouldn’t need help. We don’t deserve access or accommodation. We’re too much trouble. We cost too much. Maybe we are better off dead.” Ow!
Getting help is my priority. My slogan for myself is to get more help than I want!
Disability oppression is like language oppression. The people who are not fluent in a dominant language are seen to be a problem and a bother. As with disability, it takes time to include everybody. And that’s not what the “normal” dominant-language-speaking people expect. In addressing both disability and language oppression, we are learning that including people, access, and connection are more important than “busy and urgent.” “Busy and urgent” gets in the way of liberation.
I think disabled people are the coolest [greatest] people! The best-kept secret! We have had to think outside the box of “normal.” We have had to be creative. We have had to connect, because we’ve needed help. We are lovely, smart, creative, connected people with unique insights into how to be a person. We are all beautiful! We have amazing faces and bodies that show character, wisdom, and history.
THE OVERLAPPING OF ELDERS’ AND DISABILITY OPPRESSIONS
Elders and people with disabilities overlap. We are all eventually in both constituencies. This can be a hard thing for elders to face. Why would we want to join another oppressed group!?
In the last year I began to face my age denial. I saw a T-shirt with the slogan, “It’s weird being the same age as old people.” That perfectly expressed my denial!
I want elders to connect with disabled people. It will not be easy if you have avoided or denied disability. You can take the direction of being a proud disabled person. You will be joining one of the most resilient, creative, human, fun, smart groups of people in the world! Welcome to the disability community! And if you don’t have a disability—yet—put on the “disability hat.” Imagine getting more help than you want! Imagine using a wheelchair, this wonderful device that liberates people who have impaired mobility. Wheelchairs are one of the best inventions. I bring my wheelchair to my class at the university and invite my students to get in it. When you put a wheelchair in a kindergarten classroom, it’s the most popular toy. There should be a wheelchair in every classroom!
A big challenge for us as elders is when it’s no longer safe for us to drive a car. We can start discharging now about that and figure out other ways to get around. And what other help might we need? What about getting up and down the stairs? What about the cooking? Shopping? We can think together and make plans.
Other oppressions also target our bodies. As women our bodies are targeted by sexism and male domination. For working-class people, it is overwork, underpayment, and brutal work conditions. Pick one of your identities and work on what the associated oppression does to your body. Scan what it is like to be a female with a body What it’s like to be an LGBTQ+ person with a body. What it’s like to be from your ethnic or class background and have a body.
DIFFERENT WAYS OF THINKING ABOUT DISABILITY
There are different ways of thinking about disability:
- One way is the charity model. We pity disabled people and give them a little help. This model has been horribly oppressive and is now being challenged by disabled people. We don’t want charity. It is our human right to be included everywhere.
- The medical model arose with the medical system. The idea is that disability is something to be fixed or cured by doctors. This model offers some help, but not every condition can be cured or “fixed.” Will all disabilities have a cure someday? We don’t know.
Many of my students plan to work in medicine, law, education, and social welfare. They think they know how to help the “handicapped” (an out-of-date word, like “crippled”; “afflicted”; and worse, “idiot” and” imbecile”). Their mindset is from the oppression. I inform them about the disability rights movement, and they are surprised to know of its existence.
- A new model, the social model, arose in the 1970s. This model says that the problem is not our bodies. The problem is the attitudes, the environment, and the policies that exclude people with disabilities.
The social model acknowledges that there are hard things going on in bodies—that disability can be difficult, that there are big needs to be met, that there can be pain and limitations—but that the disability is not in the bodies.
People with disabilities need to use things like wheelchairs and the new communication technologies. We do need help. We may need medical care. We may need all kinds of things, and we should be able to get those things—and especially human connection. Yes, disability is hard, but the oppression makes it so much harder than it needs to be.
RELATIONSHIPS WITH HEALTH CARE PROVIDERS
In Western countries, the medical system is based on men’s oppression, sexism, and male domination. Doctors are thought of as gods.
I meet medical students in my classes. They are lovely. They want to help people. They want to do good things for humans. Then they face the medical training in medical schools, which is somewhat like military training. They are forced to work ridiculously long hours. They are deliberately humiliated in front of their peers and teachers! They are pressured. They are given too much information.
They are also smart and learn many facts. But what is usually not taught is how to stay human; how to interact with patients, colleagues, and other staff; how to communicate in human ways. And of course, there is no discharge and little sleep.
Nursing school is better. There’s more humanness because there are more women. And there are now more women doctors than in the past, which helps. Women are changing the health care system in lots of important ways.
When we are interacting with our health care providers, we need to remember how difficult their training was. Their work lives are also hard. They have too many patients. I appreciate my doctors. I ask about their lives. They are surprised that somebody is interested in them. I’ve gotten some doctors crying. I told one of my surgeons, “You’re one of the most communicative and connected people I have met in this profession.” She said that no one had ever said anything like that to her.
I invite my health care providers to think with me, as I know my body better than anybody else. Some get defensive, but most try to do it.
We can discharge on our early memories of medical experiences. What happened to us when we were born? What happened with early surgeries, broken limbs, and so on? How have we dealt with big health problems? This will help us be more flexible in our relationships with our health care providers.
FIGHTING FOR OUR RIGHTS
In my twenties, I started to connect with the worldwide community of disabled people and our allies. It is one of the most successful movements for human liberation. For example, we have an international treaty, the United Nations Convention on the Human Rights of People with Disabilities. A hundred and sixty countries have signed on, and they are beginning to respect and implement the rights of people with disabilities as the human rights we deserve.
I recommend a film called Crip Camp. I think it is the best movie ever made of the history of the disability movement. It starts with young people at a summer camp for disabled youth and shows several decades of legislative work and protests, including civil disobedience. (My colleagues participated in a “sit in” for a month in 1978.) It shows connections with other organizations, such as the Black Panthers [a Black political organization in the 1960s, ’70s, and ’80s]. It shows the power of organizing and fighting for our rights. It will make you want to claim this proud identity!
(Present Time 207, April 2022)