Hearing Elmo welcomes Dr. Terry D. Portis as a guest author this week. Terry has worked with the disability community since 1990 with The Brain Injury Association of NC, and then the Hearing Loss Association of America. He now works as the director of the Center on Aging and LifeStages at AACC. He supervises more than 220 faculty who teach more than 1,600 course sections each year, making it the largest program of its kind in the country.
In the September 21, 2013, edition of the New York Times, Katherine Bouton wrote an excellent article on the quandary of hidden disabilities. In the article she talked a lot about workplace issues, and whether or not a person should reveal their hidden disability. It is an excellent article, and I recommend it.
While the Bouton article focuses on the workplace, or potential workplace, what about issues with hidden disabilities with family and friends? Here are three things that happen in relationships where a disability is a factor.
I’m used to it, and don’t think about it anymore.
Often a person who is facing the challenge of a disability thinks about it frequently. They have to. They have to think about ordinary tasks differently, like going to the grocery store, or sitting in a concert. To their family and friends, it is just “Sue” or “Tim”. Family and friends are used to the disability and might even forget about it. The psychological term is “habituation.”
As family members and friends, we might want to remind ourselves the challenge that the person faces living on a daily basis with a disability or chronic illness. It might have taken all the courage they could muster just to go to work today.
For the person with disability, don’t let this forgetfulness hurt your feelings! How could they forget? Well, you want them to forget. You want people to see you for you, not you, the disability.
Good days, bad days… how bad is it?
With many disabilities, the person will have good days and bad days (like all of us). Numerous factors such as the weather, fatigue, stress, or even diet can have a significant impact. If those issues are managed or under control, then the person’s disability might not manifest itself as prominently. Change one of those factors, and the person might struggle with tasks today that they seemed to handle quite well yesterday. A personal example would be that two days ago my wife, who lives with a balance disorder, could walk across the room without any difficulty. A major weather system is now coming into our area which means that yesterday I had to grab her elbow to correct her balance a number of times just to talk to her.
For the friends and family members, don’t let this uneven performance cause you to doubt that the person is struggling as much as they really are. They aren’t “faking” on the bad days, even though to the casual observer it may appear that way.
For the person with the disability, celebrate the good days, and don’t let the bad days cause too much frustration. Realize that the people around you don’t intuitively know whether you are having a good day, a bad day, or something in between. People also do not have your level of understanding of what having a good day or bad day means. They work and live with you; however, you live with the disability.
With advances in prescription medicines and medical technologies, people often find some relief or remediation for their disability. New hearing technology? Well, glad you can hear now. New medicine for your seizure disorder? Glad that’s over. The truth is, it is not quite that miraculous.
For both friends, family members, and the person with the disability, realize that new medicines and technologies will probably not take away all the challenges created by the hidden disability. In many ways, they are miraculous, and we should be thankful for the day and time in which we live. On the other hand, let’s not allow unrealistic expectations dampen our enthusiasm for the better life that people with disabilities can lead.
Hidden disabilities create challenges in a person’s life, and in their relationships. Relationships are always “messy,” and often unpredictable. Taking a few minutes to remind ourselves of other people’s perspectives strengthens those relationships. In turn, our lives are enriched and we find deeper meaning in everyday life and work.
If you would like to contact Dr. Portis you may contact him at Lightkeeper’s Journal.
Hearing Elmo welcomes guest authors! Interested? Contact Denise at firstname.lastname@example.org
© 2013 Personal Hearing Loss Journal