Simple Truths: A Perspective on Living with a Disability
from School Health Reporter, Fall 2005
In my current position as an Independent Living Specialist, I see the many ways that people with disabilities are forced to deal with the barriers and misconceptions that are placed upon them by our society. I perhaps have a unique perspective in that I, too, am disabled and personally deal with these same issues in my endeavors to maintain my independence. These are issues most people never have to consider, and certainly not on a daily basis.
As an Independent Living Specialist, my job is to help individuals with disabilities live independently to their fullest capability. Usually, this occurs by providing resources to help them become educated and empowered to achieve this goal. When someone seeks my help, they are first evaluated with an information and referral form. Their current situation is reviewed, including their health history, their current health status and their living needs. Often, these clients have an acquired disability vs. a congenital disability. This means that the disability has occurred in an accident or over time, such as with the onset of Multiple Sclerosis. These clients may be unaware of their resources. I also work with clients with congenital disabilities such as cerebral palsy. My job is to identify the client’s needs and educate them about their resources within the system.
Often, those with disabilities have recently become unemployed or underemployed. To obtain government help, they may need to be enrolled to receive Social Security benefits. They also may need help with basic needs, such as obtaining food. I can help them get signed up to receive food stamps. I review their current housing status and identify if they require help to obtain or maintain that housing, possibly through Housing Subsidies. In addition, in order for a person with a disability to live independently, they may require Home Care Based Services, (HCBS). This may include help with dressing, bathing, meal preparation and housekeeping.
Living independently must include a means of transportation. Often, the transportation is provided by government-subsidized transportation services such as “Accesoride,” which allows individuals to go to work, doctor appointments, church and shopping.
Health insurance is very often a huge issue. I can help a person access Medicaid or Medicare. I also have knowledge of other sources for funding to help subsidize those areas that are not fully covered by Medicaid or Medicare.
In addition, I help people get established in vocational rehabilitation. If a person is no longer able to work in his or her past capacity, he or she can receive tuition to be educated in other fields via existing state agencies.
By far, I find that the most frustrating part of helping the disabled, as well as being disabled, is dealing with the views of the non-disabled. Due to prejudice, ignorance and appearing different, the disabled are underestimated in both intelligence and potential. I have experienced this many times. For example, while using public transportation recently, a driver who had taken me to work many times before suddenly commented, “Do you volunteer at Connections?” She was rather dubious to find that I worked there 20 hours a week as the Multiple Sclerosis Coordinator and as an Independent Living Specialist; I also teach psychology at Aims Community College part time. I told her that I hold a master’s degree in counseling, so I am a counselor as well, and that I have done personal counseling, rehabilitation counseling, grief counseling and career counseling. The reply was, “Have you had a lot of clients?” Another neighbor who sees me travel frequently with public transportation was under the impression that I worked, but at a menial job. I find that public transportation carries a stigma in and of itself. Interestingly, my scooter, which to me provides just another mode of mobility on short excursions (like a bicycle) can be a stigma as well. I don’t know why I appear more intelligent sitting on a chair vs. sitting on a scooter, (such as a mart-cart in the grocery stores,) but apparently I do.
Another frustration of living independently can be the structure of the system that is built to actually make the disabled more independent. Public transportation, as mandated by the Americans with Disabilities Act (ADA), keeps people independent, and yet it has many restrictions that make it difficult to have any spontaneity. Persons using public transportation must follow a structured, rigid and tight schedule. If I have a late meeting, I missed my ride. I cannot stop and talk to a co-worker or client, or I will miss my ride. I may not be able to get public transportation, and where I currently live, if I am able to catch a bus, it may well be a 60-minute wait. I know no system is perfect, but I often find myself tired of the pressured time schedules, the long rides and of feeling controlled.
Another very real frustration to the disabled is maintaining a job. Even if one is physically able to work, in order to maintain Social Security benefits, income is severely restricted. If one must work one or more part-time jobs with no benefits, it is easy to see how Social Security benefits with additional services such as the Home Care Based Services can be compromised. Many give up their jobs and along with it their independence and often their sense of self-worth to maintain these benefits.
The stress on the disabled person’s family and friends is high. Those with acquired disabilities have a very high divorce rate. Stability isn’t frequent with a disability. Relocation to a new home or living situation is not unexpected. Unwanted physical changes happen. Adaptive aids break or malfunction unexpectedly. Aides, friends and family burn out.
Often, there are many problems that the disabled cannot anticipate. Even though I have been disabled all my life and have had a lot of practice, I find this to be true. With every new setting come new challenges with new adaptations to be made. Until the new adaptations are made, the disability may seem intensified. For instance, I recently moved to a new home. I found all sorts of new challenges, even though I moved into an accessible apartment without steps. Because I maneuver on crutches in my home, I have to balance on them. I do not have the use of both hands. My reach is decreased. I found the freezer was too high and I do not have full access to it. The stove’s controls are on the back and I cannot reach them. Therefore, I can’t cook on the stove. I put my dog on a leash when he has to go outside. In my new setting, I have small bushes as part of the landscape. I soon realized that with a long leash, he was continually getting wrapped around the bushes. Being on crutches, I couldn’t bend over and I don’t have two hands to untangle and free him without leaning over and compromising my balance. The answer was to shorten his leash and shorten his boundaries as well.
As a person with a congenital disability, I would offer a few words of advice for parents and teachers who are working with children as they transition to adult life. Teach these children to be as independent as possible. This can be hard emotionally, but the more independent children become, the more successful they will be in their adult lives. They must not be dependent on your help, as you will not always be there. Indeed, the world will not hold their hands. Teach children to be assertive to their needs. People may not understand their needs and need direction to assist them. Give them lots of encouragement. Teach them not to let other people determine their worth. Help them focus on what they can do, not on what they can’t do. Focus on their abilities. We all have limitations, just by different degrees.
I hope that what I bring to my clients is a sense of their self-worth. We all learn and grow through our challenges, whether we want to or not. It can be a long, arduous journey, but with the positive self-affirmation of “I’m going to overcome this, and not let it overcome me,” we keep on trying with a “never give up” attitude.
As for me, my faith has empowered me to accept what I can’t change and to rejoice with the trials and tribulations. Nothing has come easy, so I don’t take anything for granted. Moments and memories of pleasure last a long time deep in my heart. I rejoice in hearing from friends and family, or even from getting a kiss from my dog. Kindness and compassion go a long way on a lonely day.
There is always more than meets the eye. We must all learn to embrace those special moments and not close our eyes or our hearts. We might miss something or someone very special.
About the Author
Charlotte Morgan was diagnosed with cerebral palsy as a result of prematurity. This condition has primarily affected her mobility, coordination and muscle spontaneity. She received a BS in rehabilitation counseling and related services from the University of Northern Colorado . She earned her master’s degree in counseling and personnel services at the University of Colorado in Denver . She presently is employed at “Connections” in Greeley as an Independent Living Specialist and Coordinator of Multiple Sclerosis Services. She also serves as adjunct faculty at Aims Community College , teaching Psychology. In addition, she is employed at a health and wellness center as a Reiki therapist. She can be reached at 970-352-8682.
