- [Hugh Gallagher recently gave this speech in Moscow to Prospectiva, a group of Russian disability activists. Among many other accomplishments, Gallagher is author of FDR's Splendid Deception which described the role of disability in Roosevelt's public and private life.]
Americans with disability have made advances down this road, which the Russians have not yet made. But so too, the Russian disability activists have faced hardships and sorrows in a fight for survival which Americans of my generation have not faced. We have much to teach each other. Working together, disabled Russians and Americans will be able to give support and strength to each other as we move on down that road to freedom.
I had polio in 1952 and I have used a wheelchair for exactly fifty years. Over these five decades, I have seen a dramatic shift in how Americans view people with disabilities and the disabled view themselves.
Fifty years ago, disabled people were perceived within a medical model. They were sick people who never got well. They were objects of pity; locked away out of sight. Today people with disabilities are generally perceived as American citizens who have been denied their just civil and constitutional rights. This great change has come about largely because of the work of disabled people themselves.
Over the last 25 years or so, paraplegics, the blind, those with cerebral palsy, disabled people of all stripes came to realize that if they worked together they would have the power to change society for the better. They did and they have. I believe that people with disabilities in Russia can do the same thing.
Back when I was young, nothing was accessible. Steps were everywhere and there were no ramps. There were no curb cuts, no reserved parking. Wheelchairs were mostly heavy, clunky affairs made of wicker and wood with immovable arms. Such chairs were too awkward and heavy to push. They wouldn't fit in a car. Running boards and high seats made it impossible to transfer independently from the chair to the car.
Hospitals, colleges, churches were inaccessible. In my own case, forty colleges turned me down because they were inaccessible. Movie theatres would not let me in because I was a fire hazard. The local fire marshall said that people would stumble over my chair as they raced to escape a blaze.
Airlines and buses refused me passage. Restaurants didn't want to seat me because, they said, I would scare away their customers. I was kicked out of an art gallery for fear that people looking at the pictures might back into me and hurt themselves. I have stayed in hospitals that did not have even one accessible bathroom. In Washington, DC, the US Capitol, the Smithsonian museums, and the White House were inaccessible.
When I worked for President Johnson I had to urinate in a coffee can. Being crippled was shameful, something not spoken of in polite society. We were educated at home by "visiting teachers," although some went to segregated schools for the handicapped. Some of us faced lifetime internment in institutions. They called the one in Grand Junction, Colorado, "the Pest House" for short. We were kept from voting; and in some states we were not allowed to marry, even sterilized against our will. Back then, we were "crippled" people; we were called "invalids."
Franklin Delano Roosevelt was a well known leader of the national Democratic Party. He was widely expected to be his party's candidate for president in 1924. But in the summer of 1921 he contracted a severe case of polio, which left him paralyzed from the waist down. This was a terrible blow to his political future. As a family friend wrote, "Now he is a cripple --- will he ever be anything else? His mother is wonderfully courageous and plucky, but it is a bitter blow."
FDR and his wife Eleanor were determined that he would continue his career in spite of his disability. During his long recuperation, Eleanor and FDR's assistant Louis Howe labored to keep his name before the public. She traveled the country giving speeches while Louis helped FDR maintain a vast correspondence with Democrats across the country. Roosevelt dropped out of sight for seven long years, concentrating on his rehabilitation, trying to walk again. He did not succeed.
But he did work out ways of appearing in public without people being aware of his disability. He could stand with full long leg braces, while holding on firmly to a rostrum. He could "walk" a few steps with his braces, leaning on the arm of a strong man, and using a cane as a crutch. This was, as I have said, FDR's Splendid Deception.
Calling himself a "recovered cripple," Roosevelt reentered politics and was elected Governor of New York in 1928, and President in 1932. He was reelected three more times and led the US through its Great Depression and World War II. Even though politics forced President Roosevelt to hide his paraplegia, he did a lot for us "handicapped" as we were called then:
- In his years of rehabilitation, working with other polios he created the first modern rehabilitation center in America at Warm Springs, Georgia. They invented practical methods of living independently as a disabled person. This functional training and the equipment they devised are today in use all over the world.
- FDR founded the National Polio Foundation which in its national campaigns raised the consciousness of Americans about disability and disabled people. The Foundation paid for the treatment of those who could not pay for it themselves. It also funded the research that led to the vaccine which has ended the threat of polio in most areas of the world.
- Most importantly for America's disabled, the President saw to it that every wounded soldier, returning from the War, received full rehabilitation and, under the GI bill, the education and training he/she needed to return to a job, home and family. This Federal money stimulated the development of functional equipment, rehabilitation techniques and a new branch of medicine, "physical medicine." Society began to see disabled people on the street, driving cars, holding down jobs.
In his time, President Truman provided the same care and assistance to wounded veterans of the Korean War. He also established The President's Committee on Employment of the Handicapped with its ubiquitous "Hire the Handicapped" campaigns. President Eisenhower, for his part, sent a directive to all government agencies urging them to accommodate the needs of the handicapped.
These "feel good" measures were more symbol than they were reality. They might not have done much good but they did drew public attention to the plight of disabled people.
I contracted a severe case of polio in 1952. After a year in hospital I went to Warm Springs for my rehabilitation. I had always been a fan of Roosevelt's and his spirit and enthusiasm, seven years after his death, were everywhere present at the rehab center. My therapist had been one of FDR's therapists and she told me much about the president's disability and how he coped with it. As a result Roosevelt became my role model. If he could have a life after polio, then so would I.
And I have. I returned to college using a wheelchair. I won a three year fellowship to study at Oxford University in England. I got a job working for a US senator on Capitol Hill. I was the only disabled person using a wheelchair at each of these places and accessibility problems were unending and, at times, overwhelming. Now of course all three are accessible and they serve many people with disabilities. They are accessible because of the efforts of the disability rights movement. Disabled Americans, working together have changed society.
In the years since I got polio in 1952 it has become easier to live as a person with a disability in America.
Lightweight wheelchairs, power chairs, vans, talking computers, email and ecommerce, electric lifts, ATMs and TTYs --- these and many other things make it easier for the disabled person to be independent and mobile.
It is now healthier to be disabled. When I was young, disabled people did not last long. Pneumonia, kidney infection, pressure sores were deadly. Antibiotics have changed that. Scientific seating, improved bowel and bladder programs, and portable assistive-breathing devices have made disabled life less hazardous.
I know that many Russians with disabilities do not yet have the full benefit of such advances. As your economy stabilizes and grows, such things will come. You will find they add greatly to your quality of life and sense of entitlement. They will also greatly improve your communication and mobility skills as you work towards freedom. Medical and equipment advances have been of help to disability activists, but they have not been the driving force in the fifty-year fight for equality. The most important change over these years has taken place within the self image of disabled people themselves. They now reject the role of sick patients; to be patronized and pitied. Today people with disabilities demand to be seen in a civil rights model, asserting their right to participate in the mainstream of society.
I was one of the early advocates. From my position working for a powerful Senator, I was able to effect change. At first we worked on small projects --- a ramp at the National Gallery of Art, accessible bathrooms at Washington's airports. In 1968 I drafted the words of what became the Architectural Barrier Act of 1968. I saw accessibility as a matter of simple justice --- we disabled people pay taxes just as the able-bodied do, surely we should have equal access to the buildings and facilities built with these taxes. I had been working on civil rights legislation for African-Americans, and I just naturally cast the barriers language in terms of the "equal protection" clause of the Fourteenth Amendment to the Constitution. Without my knowing it, I had written what became the first law asserting the civil and constitutional rights of disabled people ever passed anywhere. This was a start.
In 1972, something dramatic happened. Ed Roberts, a man with polio quadriplegia, was accepted as a student at the University of California at Berkeley. This was the time of the student rebellions, the anti-Vietnam marches and the Black Panthers. Change was possible and under Ed's leadership, disabled students on and off the campus organized the first ever independent living center. Staffed by people with disabilities, the center trained attendants and kept a list of those who were available and dependable for hire. They had experts who would help the disabled person to "work the system," that is, help him/her to get all that was coming to him from the confusing and bureaucratic assistance programs of the state and federal governments. They forced the city council to make Berkeley accessible just as they forced the University to make its buildings and programs accessible. For the first time disabled people learned that marches and sit-ins were effective; they learned how to get newspaper articles and use TV time to get their message to the people and put pressure on officials and politicians.