When I was 27, I met my future husband, Mark. He didn’t seem to see the wheelchair or the APBD so much as he saw the person who was my father. He and Dad became quite close. As time passed and marriage became likely, Mark and I went for genetic screening. It was just a blood test — no nerve biopsies or other difficult tests. We learned that Mark is not a carrier, so our children cannot end up with APBD.
Thankfully, progress has been made in recent years. Now, a simple saliva test can identify carriers as well as diagnose people who have APBD. The internet is improving awareness in the medical community, so correct diagnoses can be made faster than my father experienced. Research projects are underway, too. However, much remains to be done, particularly in the areas of community education and, of course, treatments and a cure.
Now, I look at our five beautiful children who will not have to endure the anger, fear, disappointments, and judgments that I endured. Why do people so often assume that physical disability goes hand in hand with intellectual disability? Why would people refuse to get to know me simply because my father was seated in a wheelchair? What will turn around these attitudes?
People are fragile. Handle with care.