By Jennifer Knapp*I was about 6 years old when I heard a thump by the side of the bed in the middle of the night. The thump was my dad’s body falling off the side of the bed. He called for me to help him back up. At the time my mom worked nightshift as a nurse and my dad worked as a case manager for the mentally disabled. I was scared of the dark so when my mom was working I would sleep with my dad. Once he was on the bed again we went back to sleep only to hear him fall off again, this time, unable to move. He told me to call 911. The doctors said later that he fell because he was unable to move his left arm and leg to balance him on the bed. He was paralyzed from a stroke. For this he spent a month in the hospital.
Every morning from then on would begin about the same. After the stroke, my mom, now the sole breadwinner, switched to day shift. She would leave for work at about six in the morning. Since she was busy getting ready for work, my father would wake me up in the morning, calling for me to help him put on his shoes. As a six year old girl, I remember helping him out of his old night clothes and into some clean clothes then put on his leg brace and shoes. For years after, he would give me the same directions.
“Strap the lower brace tight and the upper one lose…put the bad arm in and then the other.” Once I finished helping my dad get dressed in the morning my next job was to wake up Chris, my twin brother with Down’s syndrome. The bus from his special education program would pick him up around 7 a.m., giving him an hour to get dressed and eat breakfast. After making sure he would not return to bed, I would lay out his clothes then get myself ready for school. Such mornings are not normal for little girls.
There were many emotional and mental challenges growing up this way. However, it has made me more attuned to the needs of those who suffer from physical illness and the psychological issues that come with it. This, I believe, would make me a very strong and effective social worker. My own story is more than just a two-hour movie for people to watch, become vicariously enlightened, and then walk away. It was the life I lived for 23 years. Therefore, I understand that such issues are permanent and there is not always a quick solution. Families with disabilities are a group unlike any other. They are both a minority and a taboo. Few people are consciously aware of their existence. Even fewer can empathize with such an experience or anticipate their needs. Similar to how only recently people understood the effects of second hand smoke, so too understanding how and to what extent a disability can effect other family members, especially children, is still very new.
As a social worker I want to work with such families as a unit, with each member supporting each other, as opposed to two or three people only supporting the one who is disabled. Growing up this way has helped me see a need for support systems for both individuals and families who suffer from disabilities. There are a number of challenges for the caretakers and children growing up in such environments. Some of them include codependency, parentification, adultification, anxiety disorders, depression, and low self esteem. There are also economic burdens including extra medical bills and unemployment. There are also academic challenges for children growing up in these environments. With all my energy put into maintaining a house and taking care of two people who are unable to take care of themselves, there was little left to go into school work. There was even less motivation because I felt I had little to no guidance. As a child, I had a dark unspoken belief that no one really cared since the problems of both disabled family members took higher priority. However despite all these challenges I still worked hard and went to UCLA then later took my GRE and scored 1380. I have consistently dedicated myself to helping others and I wish to continue in this effort for social improvement by earning my masters in social work.
Respect for diversity to me means showing respect for people different than you. It is more than accepting people of different pigmentations or religions. It means understanding that people are the way they are for a reason. Disabled people typically try the patience of those around them. Being slower goes against grain of a fast paced society. It also means accepting disabled people the same as you would a person who is darker or lighter or with an accent. Yet today the general reaction to disabled people is one of discomfort and embarrassment.
Personally, I believe I can contribute to the diversity in social work. As a person from a family with disabled people, I can connect with others who are in similar situations. Because there is little media coverage or role models for disabled families, it can feel very isolating and lonely. You feel an inability to connect with anyone because your background is so different than from everyone you meet. As the healthy member, one feels the dichotomy of resentment and guilt, neglect and the desire to be literally invisible. There is also the question of discrimination. One may ask how someone can discriminate against a healthy member of such a family. I can give many examples but one best illustrate my point.
I was not allowed to enter the homes of any of my friends or neighbors. This was because Chris would always be with me. As a child with special needs taken care of by a father who is disabled, he was not always very clean. Many people thought we would dirty their house if we entered or possibly break something. This is, at least, what they told us. Looking back, I believe that the core reason was because they were simply uncomfortable with a mentally handicapped child in their home. They did not want to have any association with that taboo.
Going into social work I want to focus on people who are often overlooked. Often those who have a disabled person in their family are from a lower socioeconomic status, especially when the parent is disabled. This is compounded even more if it is a family of color or a working class family with no education. To get ahead in life and get an education is difficult and typically children from these backgrounds are challenged not just financially but also academically. There are very few scholarships for children from these families but even this information rarely gets to the right people in time. This lack of support and validation for children from these families who have dealt with so much in life is appalling in this society. When a child from this family sees all the grants and scholarships out there and none for him or her, it just reinforces the theme that permeated throughout their life; other people’s problems and challenges are more worthy of attention than theirs.
When I read about families with disabilities it is often meant to be uplifting. The moral of this modern fable is that living with people with disabilities makes one a better and wiser person (e.g Forrest Gump). This may be true but I also think it undercuts the pain and remorse one goes through when there is a disability in the family. On the other side there are movies where mentally or physically challenged people are a joke (e.g The Ringer, Dumb and Dumber) Working with people with disabilities, I want to show them that it is ok to be angry. It takes a long time to work through that anger and mourning of all the loss. Most disabled people and their family are not allowed that time. From personal experience, it was very therapeutic when someone finally told me that there was nothing wrong with me, just something wrong with my extremely unique situation. I want to help other people work through issues such as illness and disabilities, because there are few things worse than living with tragedy alone.
