I am learning a great deal about disability. Though I can classify myself as disabled, I have never thought of myself this way. The term in itself implies limitation and little hope. Synonyms for disability include: disqualification, incompetence, incapability, lack of power or ability. There is even a definition that is specific to work. Random House Dictionary includes a definition of “a physical or mental handicap, esp. one that prevents a person from living a full, normal life or from holding a gainful job”.
In general, I prefer to reflect on the statutory definition of disability. Statutory Definition — With respect to an individual, the term “disability” means
(A) a physical or mental impairment that substantially limits one or more of the major life activities of such individual;
(B) a record of such an impairment; or
(C) being regarded as having such an impairment.
I like the focus on the impact on activities verses implying that someone with a “disability” can’t live a normal life. I would prefer the word “impairment” be changed to condition, because many “impairments” also come with strengths that may be less measurable. Unfortunately we also fail to note that some of these “impairments” can have less impact on someone’s life activities with simple modifications.
The best way I can describe myself is that I have been regenerated. I believe that my condition has moved me to” re-create, reconstitute, and, make over, esp. in a better form or condition.” The pain I feel in my body brings me a greater awareness of my physical and mental state. Because stress increases my pain level, I am more committed to addressing problems and maintaining a positive attitude. Because I struggle with fatigue, I have made adaptations to my schedule. I have more down time to spend with my family, and constantly evaluate my values and priorities so I can focus on what is most important. As a person I am much more compassionate, humble and understanding of the challenges people with limitations face. I also have learned new survival skills, medical terminology, and assessment techniques.
When I make adaptations to my life, I notice less the negative impact of my physical condition. Because I have extreme pain back and have periodic pain spasms, sitting can be difficult. At home, I encounter the intense pain less, as I sit on my couch to type. During meetings or in the office, I am still searching to find a comfortable working chair and ways to keep this more manageable. When dealing with my fatigue, I find that it is best to tackle the detailed activities during my prime time, as I need to be able to focus. When I feel more tired, it helps to focus more on my natural abilities like talking to people or doing routine tasks.
Because my symptoms are less visible, many people are not aware of my physical challenges. Disclosure is a balance not easily understood. For me it has less to do with rights, and more to do with support and my motivations for disclosure. It is important that I have people around whom I can talk to in both the work and personal environments. In situations where I am doing a task, or have less personal contact it is less significant to fulfilling my role. I choose to live with a degree of potential misunderstanding instead of making my condition part of the equation. I seek to remember that those around me may also have limitations that I am unaware of.
I am grateful that I have had opportunities to explore my vocational interests through volunteer and work experiences. It isn’t easy, and has required a great deal of flexibility and personal growth through some tough challenges. I keep in mind my own values, and keep pressing ahead. It may not always turn out the way I want or expect, yet, it is always enriching if I allow it to be.
References:
Random House Dictionary, © Random House, Inc. 2010.
Chronic Pain Journals 