The Wilderness

I am afraid to leave my apartment everyday of my life. I am not afraid of the people; for me, the city of Philadelphia is truly the City of Brotherly Love and Sisterly Affection. Philadelphia is a city of neighborhoods. A welcoming place where people go about their day, and get the business of living done. Yet there are two parallel experiences of living in Philadelphia. For people without disabilities getting around Philadelphia is routine. However, if you have a disability or rely on a wheelchair to ambulate, the city I love is an inhospitable wilderness of cement and steel.

Nineteen years after the passage of the American’s with Disabilities Act (ADA), our Nation remains largely inaccessible. A single step is all that is needed to segregate an entire people. The ADA was meant to be the bare minimum; requirements that were to grow more extensive as society progressed towards being more accessible for all.

Every day my fellow Philadelphians give me their help. They have literally offered me the coats off their backs on rainy, cold nights. My fellow citizens have saved me more than once. The point is that they shouldn’t have to. People aren’t the problem, it’s a system of transportation that is organized to view passengers with disabilities as ancillary, a system that keeps us on the fringe. My neighbors are shocked to learn that I often have to risk my life to get to work or to the grocery store. An uneven curb can end me. The situation is even more dire in the older areas of our nation.

The only completely accessible transportation system in Philadelphia is the bus system. I am thankful that the city offers a reduced fare for disabled passengers. However, when I wait at a bus stop alone, buses often zoom past. After observing this, caring strangers will wait next to me at the stop until I am onboard, before continuing on their way. Some drivers do not know how to use the ramp or lift, and many times the equipment fails. I am terrified by the prospect of transferring buses. I risk being left between, stranded in a foreign land.

This is a national problem because a comprehensive national system of accessibility does not exist. Although it is important for each community to decide what is the best strategy of accessibility for their locale, a lack of standardized systems mean that visitors are left unsure of what they can count on in an unfamiliar area. This chills usage of the systems that are partially useable.

Curbs are often too high to scale or drop off, yet curb cuts may be at one end of the block, but not necessarily the other. Road construction usually covers the curb cuts, and temporary ramps are only sometimes built. Snow plowing pushes mountains of snow directly in front of the curb cuts. Wheelchairs aren’t very good in the snow. I have been stuck in the cold deep dark snow, battling against time, hoping that someone would come to my rescue before I develop exposure burns again. Every time I leave my apartment when it has snowed, I hope that I’ll return that night.

The trains are only partially accessible, only a very small percentage of the stations are accessible. Yet even at the accessible 30th St. station, a key is needed to activate the elevators. Only a red cap can carry these keys. I have been caught at the platform in the dead of winter. The corridor acts as a wind tunnel, blasting my bones with bitter cold. I have waited for over an hour there, an ordeal that fills me with fear even as I write this.

Our Nation’s transportation systems are a series of interconnecting systems of different types of transportation that have multiple access points. The trains, subways, trolleys, taxis and buses form an interdependent network. If only a few of these different types of transportation can be traversed with a wheelchair, whole swaths of the city might as well be in Antarctica.

There aren’t enough tax incentives or requirements, so wheelchair accessible taxis are nonexistent on city streets. While many cities do have wheelchair accessible trolleys, I have never seen one in Philadelphia.

The reason that these pervasive obstacles continue to exist is that they are not noticed by people unencumbered by them. My neighbors are shocked when they see how difficult it is for me to traverse the hazards unknowingly laid out before me. For the “Key stations” that are accessible, there isn’t a standardized way to report down elevators. Even when the transportation systems are accessible, they are rarely consistent, a real problem for most employers. A constant fear of mine is that I will get half way through my journey and end up stranded because an elevator is broken or leads to stairs.

The situation is even more challenging in suburban and rural areas where there are fewer options. In these areas the only option often available are accessible shuttle services. However, many people who use wheelchairs do not qualify. Furthermore, this option segregates the users from the rest of the traveling public. Wheelchair accessible taxis are almost nonexistent. If you can find one, they are many times more expensive to hire than able-bodied taxis. A wheelchair accessible van can cost $50,000 and more to buy.

In a mobile society like ours, transportation is critical. Transportation is the glue that facilitates all the spheres of life. A job is impossible if you can’t get to it. This results in a massive cost to society. Medicaid and Supplemental Social Security Income expenditures are much higher than they should be because far too few people with disabilities are able to live in the community because they cannot get anywhere. Medicare and Medicaid must spend many times more per person to warehouse us in institutions, rather than support us in the community. Billions of dollars are wasted in productivity, while people stay stuck in their homes. Medical care; so important for people with medical conditions, is useless if people cannot get to it. Society must then cover the cost of ambulance rides to the emergency department for preventable conditions.

One reason why truly comprehensive transportation systems have not been created is that the able-bodied designers of these systems are without any personal knowledge of what it is like to try and utilize these systems. We can have a more cost effective transportation system accessible to all, in a non-segregated way, if the designers do not view accessibility as an afterthought, but instead see accessibility as a primary base requirement of any proposed transportation component. It is not enough to read about the requirements of accessible transportation, or to virtually design facilities. It is critical that city planners spend some time using wheelchairs and walkers, spend some time viewing and hearing the world without sound and sight. It is also critical that the spend time experiencing what it is like to be a caretaker and try and get a loved one through the system. Without this knowledge designers will continue to create transportation networks that strike fear into the hearts of millions of Americans, not to mention waste resources and productivity.

This issue is now more important than ever before. With the increases in medical technology and knowledge, children with disabilities that would have ended their lives early, are now living far into adulthood. We have men and women returning from Iraq and Afghanistan who are surviving with injuries that would have been fatalities in previous wars. Their families depend on them having productive employment to support their families. Without avenues to express their aptitudes, these heroes are much more likely to descend into the shadows of shame. With our population getting older, our entire society will suffer, as a growing percentage of our society finds itself segregated. This also puts substantial pressure on the rest of the family if they must go to extraordinary lengths just to get their loved ones out of the house. Many Americans are going to have a rude awakening as they age, and discover that they are no longer welcome participants in the daily life of the Nation. We as a Nation, owe it to ourselves to live as full a life as we wish, even in our waning years. Our families deserve to have us included, and not have to decide between going out, and spending time with their loved ones.

A large percent of Americans live with a disability, and their loved ones are also affected. In order to deal with the problems of health care and the economy we must have a paradigm shift where it comes to disability. Disability is not a dirty word. Disability culture, and people with disabilities have a lot to offer. No civilization has ever reached greatness without our contributions. Disability is an intrinsic component of the human condition. If you live long enough, someday you will have personal experience with disability. It need not be a death knell. People are not the problem. It is a lack of systems that view disability pragmatically, and a lack of experiential knowledge on the part of the designers of our Nation’s systems, which keep them segregated structures. Before any policy or structure is proposed, the question should be asked, “How is this going to affect the majority of Americans touched by disability or chronic illness”? Now more than ever we need Society’s systems to be accessible. Otherwise in a day not too far into the future we may all find ourselves on the outside looking in.

Matthew Purinton, MSW, LSW is a Staff Therapist in Council for Relationships’ University City office and can be reached at 215-382-6680 ext. 3135.