Spinal cord injury and centers for independent living.

Among the most significant factors that emerge from any study of this country's independent living movement is the key role people with spinal cord injuries have played throughout its history. As the movement began to take shape and gain momentum 30 years ago in Berkeley, California, individuals with spinal cord injuries were among its principal founding members.

I believe a major reason for this level of interest and commitment relates to the unique frustrations people with spinal cord injuries felt over early rehabilitation practices. Often isolated in back rooms or institutions, their few hopes for the future centered around the prospect of being able someday to live independently. A national movement was developing that could give disabled people a voice, and people with spinal cord injuries began to see independence as an opportunity finally to gain real political and economic strength. With its strong foundation of consumer control and advocacy, this new independent living movement had great potential to become a forceful political movement by attracting a broad, cross-disability population at the grass-roots level.

Many people who had been living with a disability in our society found this innovative philosophy compelling because it provided a spark of hope and optimism. The peer support model within an organizational structure stimulated people to rally behind the movement and begin taking control by creating the means for independence in their own communities. The peer support model has given so many of us the motivation to go ahead with our dreams. Others with similar disabilities were living productively, so why shouldn't each of us pursue those same kinds of opportunities? Word about independent living spread throughout those local communities -- to rehabilitation centers, nursing homes, and community-based organizations -- and the impact was felt immediately.

For far too long, disabled Americans have been overprotected and, consequently, not able to make independent decisions. Independent living was intended to change that, which makes good sense for a variety of reasons:

* Independent living is a consumer-controlled model, giving the individuals affected by its practice authority to manage their own services.

* It focuses on the person's total situation by addressing direct service needs as well as advocacy.

* It works toward educating the entire community about the rights of all people with disabilities.

* It helps transform "tax consumers" into "tax payers." Therefore, it is extremely cost effective.

Today, every legitimate independent living center offers four core services: independent living skills training, peer consultation, information and referral, and advocacy. Of course, most centers offer much more than just the basics. Housing, personal assistance services, outreach, and youth and family programs are excellent examples of other efforts that independent living centers are undertaking in meaningful and innovative ways.

A Personal View

As an individual with a spinal cord injury, I have developed a rather personal appreciation of how the independent living philosophy can turn lives around. I became disabled in 1959 from an automobile accident. My injury occurred at the 3rd, 4th, and 5th cervical level of my spinal cord, which resulted in quadriplegia. I lived at home with my mother for as long as possible, but financial constraints and the pressure of meeting my physical needs finally necessitated moving into a nursing facility. That was our only choice at the time, and a frightening choice it was. Back in 1959, though, my type of disability was perceived as one requiring a great deal of medical and personal attention; for most people with similar disabilities in those times, there simply was no alternative.

In the nursing home I began filling my time by painting, reading, and studying art history. I took my painting very seriously, but quickly learned how stifling institutions can be for someone who wants to grow and develop. It was maddeningly difficult to get others to understand how serious I really was and, over time, I became quite frustrated. That led to anger and, after 12 years, a life-or-death search for some way to move out on my own.

In those days, the St. Louis, Missouri, community offered virtually no support for people with disabilities beyond the traditional sheltered workshops and recreational type organizations. But I wanted something different, something that would help me move from an institution into the community so I could live independently. It became quickly obvious that this "something different" simply did not exist, so after much discussion with a close friend and many lonely hours of introspection, I decided to take a risk and start my own organization. I was going to be independent, regardless.

It also became readily apparent that what troubled me concerned many other disabled people as well. I was not alone. And not being alone was good. Tireless grassroots advocacy and determined communitywide education would prove to be essential agents for meaningful change. Our reason for being was to achieve full civil rights for people with disabilities; barriers to this goal included an inaccessible community, lack of affordable and accessible housing, high unemployment, and, most daunting of all, the paternalistic and condescending attitudes pervading our society.

Today's Challenges

Alas, many of these problems still exist, and independent living centers still are working hard to change them. The good news is that major advancements have been made, and new barriers are overcome every day. The independent living model continues to gain acceptance as a professional service which plays a significant role in the lives of people with disabilities. Additional efforts are under way to work closely with vocational rehabilitation, medical rehabilitation centers, and other agencies that influence the quality of disabled peoples' lives.

As old barriers are overcome, new ones keep popping up. A good example: as managed care becomes a greater factor in today's healthcare mix, there is grave concern about access to specialized medical services. For example, people with spinal cord injuries have greater potential now than ever before to live healthy lives with minimal secondary complications. At the same time, though, if we don't have access to specialized medical services, we could put our health into critical jeopardy. There are certain healthcare problem areas we need to observe closely to prevent complications. Difficulties such as urinary tract infections, pressure sores, and autonomic dysreflexia,(1) for example, could become life-threatening if not treated properly -- and promptly. But with appropriate' preventive measures and treatment, people with spinal cord injuries can live long and productive lives.

Independent living centers are playing a pivotal role in the evolution of America's healthcare system by advocating for people with disabilities to have equal access to the best medical care our nation has to offer. Through peer support programs we are offering practical, day-to-day-living consultation to individuals who are newly disabled and looking for advice on what it means to live with a disability in modern society. We offer practical approaches to avoiding secondary complications and carrying on with everyday personal life. Pursuing a career and having a family are not just possible -- they're encouraged.

Too often, people with spinal cord injuries run into significant problems after they are discharged from a rehabilitation center. The reality of having a permanent disability sets in and there is no one available with a similar disability in whom one can confide. Rehabilitation centers need to work directly with community-based independent living centers to assure that when a person is discharged she/he has access to appropriate support services.

Community Outreach

In recent years, independent living centers -- primarily through their peer support programs -- have taken on even greater importance because of the increase in disability related to violence. In urban areas, the number of people disabled from head and spinal cord injuries by firearms dramatically surpasses those from all other causes of injury. Once people disabled by violence are discharged they often return to an environment characterized by few supportive services, and sometimes by minimal family support. They also lack access to any political power structure that could influence change in their communities. Those individuals, in far too many instances, drop out of sight and reappear only when a major secondary health complication sends them back to the hospital. Urban independent living centers desperately need to develop outreach methodology and funding to address this fast growing crisis.

By building strong outreach programs, independent living centers can establish solid working relationships with neighborhoods and communities. In becoming a vital part of a community's fabric, those centers in turn gain greater access to people who have disabilities; services then can be built around real needs, and, at the same time, centers become well-positioned to educate community leaders about disability rights. And neighborhoods must become more aware of issues facing citizens who are disabled; too often, people with disabilities have to move away from their communities because they are unable to find accessible housing or because they lack reasonable accessibility to neighborhood amenities. People should be able to live where they choose and not have decisions made for them based on whether they have a disability.

Spinal Cord injuries and Aging

Another emerging issue today relates to aging with a spinal cord injury. It's certainly an emerging issue for me, since I've been disabled for more than 37 years and am moving steadily closer to birthday number 60. There's a dearth of research available to tell us what happens when a person with a spinal cord injury reaches 60, 70, and beyond, but I believe my energy level at age 59 is higher than ever. Being married and having children ages 17, 11, and 8 may have something to do with that. And besides, a lack of energy just isn't an option for me. My major concern seems directly related to not knowing what to expect when it comes to growing old with a spinal cord injury. Call it fear of the unknown, perhaps. It's only human nature to avoid lengthy examinations of our own mortality, so we don't always focus much attention on what it really takes to go beyond just living a long life; quality of life is important, too. We need to learn more about physical fitness and what can be done to create opportunities for more people with disabilities to participate. For those of us with high levels of quadriplegia, exercise becomes a much more complicated matter. Issues of good access to specialized physicians, exercise, diet, and recreation become at least as important to us as to anyone growing older in America. In the past, disabled people have had relatively little concern about additional complications that come with aging, such as heart disease or cancer, but these too have become topics we must face.

The Role of Technology

Every day, media reports tell us of new and often unfathomable advances in technology. But we absolutely need to learn those new technologies and take every advantage of them. I cannot envision a group more able to benefit from technology than people with disabilities. Computers are enabling us to pursue careers not even possible a handful of years ago and to become more efficient in our daily lives than anyone could have expected. Through computers we now can control our personal finances, do our banking, and play games with our children. And virtual reality has more possibilities for exercise, accessibility, and product design than we can even begin to envision. With developments coming in quantum leaps, it would be foolhardy not to make technology work for us, in every possible way, to improve our ability to live happier and longer lives. Simply put, technology will dramatically affect how one ages and lives with a spinal cord injury, if we seize the opportunity for it to do so.

When we take a look at all of the opportunities available to us in our society, and how they can literally turn around a disabled person's life, centers for independent living have a responsibility to bring organizations and people together from diverse segments of our communities. We need to do a superior job of networking, so those segments can better understand each other. The alliances we build can have a significant impact on educating our society about disability rights and disability in general. It cannot be overemphasized that forming coalitions to address specific social or political issues is a major advocacy responsibility of the independent living centers. We need to build and maintain a climate that fosters cooperation and teamwork; stated a bit differently, we have to avoid the infighting that has stalled the progress of other movements.

We need to come together, unified as disabled people, to understand each other's struggles and needs. Paraquad has tried to address this by developing support groups. Groups are developed around particular disabilities, gender, and advocacy issues. The spinal cord injury support group has been especially successful, and its members discuss topics ranging from advocacy to community attitudes about people who use wheelchairs. The exchange often leads to people generating ideas about what they need to accomplish in their own lives to live more independently.

Independent living centers exist to help people address their issues, to offer avenues to self-determination for persons with spinal cord injuries as well as those with other disabilities. Whether it be support groups, information and referral, job counseling or peer consultation, independent living services are available over a person's lifetime. And advocacy, whether directed toward one's own life or toward public policy initiatives, affects our entire community.

Independent Living Centers and Public Policy

Independent living centers have gained formidable experience over the past 15-20 years, and today it is imperative for us to put that experience to work. We now know that people -- no matter how significant their disabilities -- can live independent and productive lives. We have learned that we should not blame the disability for the barriers placed in the paths of people with disabilities. We know the environment be changed to include all people in the mosaic of American society. Once environmental barriers are removed, people with many differences can be highly productive and valuable members of our communities. In our society today, we cannot afford to waste a single human being, for every individual is valuable and can lend to making this a better world for all of us.

Independent living centers not only have a responsibility to advocate for societal change, but an obligation as well to understand where people with disabilities are living and why they live the way they do. Once we know where people are living and why, and the kind of support services they are receiving or need, we can then design our services to meet the greatest demand. This information will also enable us to better organize into coalitions and work toward advocating political and social change. Through the development of new support systems and improved utilization of existing support systems, we can assure that disabled Americans are presented the best opportunities in our history to live strong and healthy lives. We must demonstrate to our political and civic leaders and to the general public that the rights of disabled people are not being met. We, as a society, have no choice but to extend to our disabled brothers and sisters the same rights extended all others. No longer can we presume to know what disabled people need or want. We, as disabled citizens, need to speak out and tell our community leaders, our institutions, and our nation what we want. We must be clear. We must be direct. And we must say it often.

Obviously, there is a great deal to do. But the independent living movement has never been in a better position than now to go out and get it done.

Note

(1.) Autonomic dysreflexia is an abnormal reflex which occurs in people with spinal cord injuries at the level of T6 and above. A noxious stimulus such as bladder distention causes a chain of reflexes which can lead to dangerously elevated blood pressure, sweating, headache, and other symptoms. The condition is treated by removing the offending stimulus and giving the patient medication.