Let’s call him Stanley, an elderly gentleman who suffers from manic depression and mild mental retardation due to complications at his birth. Stanley grew up in Missouri on the farm way back in 1930 and spent much of his youth working and going to church each Sunday. Stanley is a very outgoing and friendly man who loves to talk for hours about cars, farm equipment and his family. Due to his disability Stanley can at times during the manic phase of his depression be extremely stubborn and nearly impossible to reason with. When Stanley’s family could no longer care for him state institutions assumed the role as care provider. Some of these facilities resorted to physically restraining Stanley to a wheelchair during his manic phases. Now try to imagine your own grandfather tied to a wheelchair, his dentures removed and his needed medications withheld. Imagine that during your visits his eyes fill with tears when he sees his friends and family coming towards him. Now try to imagine doing nothing at all for him, in effect turning your back and leaving him at the mercy of a state run agency.
For most, if not all of us, we would do everything legally and even illegally possible to remove a loved one from such an environment. But every day millions of adults who have developmental disabilities have no one to go to bat for them. Their fate resting upon the charity of complete strangers. Are these people less important because their families have died or even abandoned them?
Millions of Americans must deal each day with a developmental disability, a population more commonly known as the “mentally retarded”. For a lucky few care providers strive towards helping them attain a higher degree of independence which in turn gives their lives the same meaning and purpose we all strive for. For many though, like Stanley, each day is filled with hopelessness and despair.
Much of this suffering is due to ignorance of the disability. Many people assume those who are mentally retarded have only the minds of children and cannot possibly know what is going on around them, but this is a terrible misconception. Like any other disability such as blindness or an amputation, only part of the person is disabled while the other parts function normally, in some cases even better to compensate. Would then this not be true for someone who has a mental disability? When we realize that a mental disability effects only a part of the person, we must then acknowledge that the rest of the person is perfectly healthy. How then can we continue to allow adults to suffer inhumane treatment, to be subjected to near torture and have their dignity stripped from them? The only answer is that more resources need to be made available to people and agencies who deal with developmental disabilities.
In 1998 I have began working with this population at a local facility. I worked directly in the home of the “consumers”, which is the insider term for referring to those persons receiving services. This is the same work my grandmother devoted herself to when I was a child and her experiences have given me a unique insight to the dilemmas and concerns of working with the developmentally disabled. From a very early age she would take me along to work with her to learn and see the conditions, which back in the late 1970s was nothing more than an old mansion donated to the state for mental patients. Many of the adults had been institutionalized since birth, never knowing independence, responsibility, or even how to sit and eat at the dinner table. Since funding was so scarce the institution had difficulty even providing nutritious meals consistently let alone providing an educated staff whom could offer reasonable care.
Now twenty years later, though some agencies provide excellent care, many more agencies operate in terms equivalent to a dark ages. Much of this can be due to a combination of a lack of funding, which seems odd considering the prosperous economic times we are currently enjoying, and a lack of education on the subject. Sure, we may all want to help the mentally retarded, nobody needs any convincing of that, but how do we overcome the social ignorance of the subject which is at the very heart of the problem?
Recently I had the opportunity to go bowling with my friend “Robert” who is moderately disabled. Having great difficulty communicating verbally, several obsessive compulsive behaviors and since his eyes do not look straight ahead but rather point outward, Robert, upon first appearance, would seem unable to take part in the sport. I was pleasantly surprised when he bowled near a 200 each game. I had forgotten one of the golden rules: never underestimate your fellow man. Not only was my friend an outstanding bowler but my watching the pride in his eyes and in his walk reaffirmed in me that, though he may be disabled in some ways, so was I. We must never forget that the disabled are human beings with feelings and dreams who each have desires and abilities.
All through history we can find examples where people who are different have been misunderstood, abandoned, and even left to die. The human animal has always considered physical weakness as a threat to the tribal community. Possibly when man had to hunt wild game in order to survive in the wild was this the only way to ensure success. The ancients of Greece exposed babies which bore signs of abnormalities on mountainsides for the wolves. During medieval ages persons who were different might have been accused of being a witch or demon and executed. American folklore is colored with tales of the town idiot, a fool portrayed as an eternal child or human animal capable of the bestial activity. The mentally retarded “are perceived as deviant, different, and economically unproductive” (Bogdan 15).
History holds the answer to why those who are different, and mostly those with a mental disability, have been mistreated. We fear. The mentally retarded “represent an embarrassment to others” (Bogdan 15). Fear is still the reason why parents who have a child with mental retardation will put them up for adoption. Some parents may retain a legal status over their children, but place them in institutions for their entire life and rarely take part in their lives. Right from the moment their lives begin they have been abandoned and not given a fair chance to make an impact on the world and to be productive. When this crucial first challenge is missed private and state agencies must provide care for these individuals. Unfortunately the opportunity is often lost even at this stage.
Recently, during an interview with an interviewee, a young woman talked about the agency she had just come from. When asked to cite an example of a challenging situation she had to deal with she spoke of how two individuals who were roommates at this facility wanted to have an intimate relationship. She decided the best solution was to remove the door to their room and forbid any such behavior from occurring. Not once did she or the other staff stop to consider the rights of these two people. They managed only to strip them of their dignity and take away something which no person has the right to refuse another. For obvious reasons our agency did not hire this person. Incredibly this situation is common and occurs every day in our civilized and enlightened society. People who are in positions of care have so few skills and education that these disabled persons may never have the opportunity to lead a full and independent life.
Funding plays a key role in this tragedy. Agencies who desire to give the best care cannot afford to hire staff with the necessary skills to carry out that plan. Even when a staff is assembled that does care and does everything it can to provide the best service, a lack of training and education will once again fail the person receiving services. A good example is to go to your local library and collect all the books on the subject of developmental disabilities. You might be surprised to find all the books fit into a neat and tiny pile of terribly outdated resources. This explains why even parents who are involved in their disabled child’s life turn to agencies because there is just not enough information available to educate the public on the subject.
These agencies have subsisted on such minimal funding for so long that their policies reflect outdated standards and the managers are too tired and stressed out to care anymore. State institutions are even worse because they are controlled by bureaucrats whose only concern is for the bottom line and not with the patient. Facilities such as these are the most antiquated and useless of all. Many still resort to tying people like Stanley up to their wheelchairs rather than offer a needed service. The only possible solution for cleaning up these institutions is for citizens to demand their legislators to provide more funding and educated staff into these facilities.
When families do want to provide for their disabled children and they discover that there are no adequate agencies available they must resort to providing the services themselves. With such little information on the subject a parent must “play it by ear” hoping that they are providing the best care for their child while at the same time helping them be more productive and independent. In many cases this can be only half the battle though for many developmentally disabled persons suffer from physical ailments which can strap a family financially. Medical insurance policies can be extravagantly overpriced and medications can cost some persons thousands of dollars every month. How can a family working three jobs be expected to provide the necessary care? Medicaid, Medicare and other social agencies have restrictions on what types of care can be given. Everywhere one looks there are brick walls set up to impede the success of a mentally disabled person.
In the June 1994 Developmental Disabilities Journal, Barbara Hanft, an occupational therapist, describes the pitfalls of parenting a child with a disability. She speaks of the rift between health care professionals and the parents. Often a parent can become extremely stressed out and appear to be doing a “bad” job. Sometimes families may disagree with the professional and again be labeled as a “bad” parent (Hanft 5). These issues can only hinder a persons ability to receive the appropriate services. In a case such as this, when all parties are concerned for the care of an individual, it becomes clear the many impediments which can stand in the way of success for a disabled person who is attempting to receive/provide good care.
These issues would seem of even greater importance if for some reason you were to one day become mentally disabled much as another one of my friends had become. He had been a healthy and independent young man until a head injury on the job site caused brain damage. “Chris” has been diagnosed with a seizure disorder that has caused numerous injuries when he has fallen. Chris must wear a helmet wherever he goes and he must also wear a large belt with hand loops so that staff can assist him in walking. He now relies on the services of others to help him with everyday tasks such as bathing and shopping. Luckily he has found an agency which can provide the best possible care but there are many more like him who have not been so lucky. These are people just like you and me, people who remember a time in their lives when they were totally independent and who now must rely on the care of strangers.
At the very core of the entire problem is an issue of self-esteem. When society labels a group of people as being useless to the productivity of a community how then could these persons ever be expected to have a reasonable chance to explore their many talents and skills? By ignoring this population we are in effect saying we do not care. Even if we do care, we cannot simply assume others are providing for these people effectively.
All our resources must be made available to the developmentally disabled. With the economy of the United States having never before seen such growth and prosperity Americans are enjoying a standard of living unparalleled to the rest of the world. Yet many Americans are not being allowed to take part in this success because they have not been given the skills necessary to make a positive impact and even worse must deal with the discrimination of being “mentally retarded”.
There are never going to be easy solutions to this problem, years of prejudice and ignorance must first be overcome before we can ever expect appropriate funding and services to be allotted to the persons and agencies who are desperately needing them. When the funding issues have been dealt with then one can expect to see an influx of care providers into the field because they can expect a reasonable wage to be earned in the field. But for now hundreds of thousands of children and adults languish in inadequate facilities – their talents lost, their potential being wasted by agencies not even trained to recognize them. Surly this tragedy can no longer go unnoticed, money and education must be made available immediately. Stanley should never again have to fear the day when he is strapped to a wheelchair and left to die alone.
Bell, Leland V. Treating the Mentally Ill: From Colonial Times to the Present. New York:Praeger Scientific, 1980.
Birren, James E., Dennis K. Kinney, K. Warner Schaie, and Diana S. Woodruff. Developmental Psychology: A Life-Span Approach. Boston: Houghton Mifflin, 1981.
Bogdan, Robert, Steven J. Taylor. Inside Out: Two First Person Accounts of What it Means to be Labeled ‘Mentally Retarded’. Toronto: University of Toronto Press, 1982.
Hanft Barbara. “The Good Parent: A Label by Any Other Name Would Not Smell as Sweet.” Developmental Disabilities: Special Interest Section Newsletter 17 (1994) : 5.
Meyers, Robert. Like Normal People. New York: McGraw-Hill, 1978.
Morales, Armando T., Bradforn W. Sheafor. Social Work. Boston: Allyn and Bacon,1992.