Wednesday, August 3, 2011

Meet Sonshine, check ignorance at door

I am thrilled to share a new parent voice with you today. Beth Davis, above with her son, is a third-year pharmacy student living in the Bay Area in California. Beth writes about her son, who she refers to as Sonshine, on The Sonshine Chronicle. Check her blog to see Sonshine's new red glasses! Beth writes here about the disconnect between her experience as a mom of a child with a rare syndrome, and the ignorant comments she hears her classmates voice about disability.

Meet Sonshine, check ignorance at door
By Beth Davis

As parents of children with special needs, we all have good and bad experiences with the world of health care.

It's always something of a toss-up when we go to a new specialist whether that professional will understand and respect us.

But is it any wonder that many professionals don't know how to interact with families when comments like the following leave the mouths of students entering the profession?

“When I lift my bangs up, I look like I have Down’s because my forehead is so huge.”

“I would have thought of the answer if I weren’t so retarded.”

"I just don't want to adopt a mentally deficient kid who is just going to sit in a wheelchair and go, 'uuuuuh.'”

Just a little background: I am a student pharmacist. When my son was born with a rare genetic condition (a deletion on the 11th chromosome, aka Jacobsen syndrome) I took a year off school to stay home with him.

That year, as you can imagine, was filled with doctor's appointment after doctor's appointment. Then, as the doctors' appointments dwindled, it became therapy session after therapy session. Taking that year off was not part of my life plan, but in the end I was happy I could care for my son in that capacity.

I am now back in school. Despite the isolation of my son's first year, I dove back into the world of classes, homework, exams and a social scene that most definitely does not revolve around children -- never mind children with disabilities!

As I became more integrated into my new class, I couldn't help but notice the how little our program was doing to expose us to disability issues. While I would likely not have paid much attention to the above comments before my son was born, now these words hit me in the gut and paralyze me.

Despite the disturbing comments that have come from some classmates, I know that as a group, my peers and other professionals are generally quite compassionate. We want to help. We want to make a difference in another's life. None of these comments were said out of malevolence, but rather out of ignorance. As we all know, the vast majority of people have no idea what families who are caring for children with disabilities go through -- and that majority includes doctors, nurses, pharmacists and others on the medical-care team.

Most health-care professionals I have interacted with have been pleasant, although a few have been downright rude (it probably helps that my son happens to be an incredibly happy little boy who smiles at just about anything). We are lucky to receive care at a cutting-edge health care facility, but even here few doctors seem to understand what we, a family with a disabled child, are experiencing.

They don't understand the isolation, the demands of therapy, and the worry that everything could just fall apart without a moment's notice. They also don't understand the elation we feel when our children overcome challenges and prove the naysayers wrong.

Mostly, we have encountered an attitude from professionals that includes bucket loads of sympathy and a desire to help, mixed with a pinch of pity. This kind of attitude, to me, is not ideal. Instead of sympathy and pity, I would rather they celebrate my son with me, no matter what his medical and developmental issues may be.

It is a difficult problem, this lack of awareness, but not one that's being ignored, at least in our school. I know that for the medical students there are small group forums where 15 students sit around for an hour or so and listen to someone like me talk about life caring for a disabled child.

In our own pharmacy school there are curriculum changes being made to include special topics on disability issues, but what topics will be presented is yet to be determined. However minor, I view these changes as hope that future health-care providers will have smoother interactions with the special-needs community.

The reality, though, is that I still haven't told many of my classmates about my son's condition, despite the fact that if you met him, his disability would be fairly obvious at 18 months of age. Cognitive disabilities carry a distinct stigma, especially in the social circles that surround me. It's not an issue of compassion, but rather that our school culture places such a high value on intelligence. So where does that leave those with a low IQ?

Not really less human, or even less valuable, but rather foreign.

Even when I told my closer friends about my son's Jacobsen syndrome through email (at the time I just couldn't bear to say the words out loud), I did not receive replies from some until a week later. From others, there was no reply at all. As I do start opening up about our family's story with the rest of the pharmacy school community, I can only hope that my son can help put a face and a 'real-ness' to disability. Maybe then, off-handed comments such as the above will no longer hold a place in any conversation.


Thank you for sharing your story with us -- as a mother to a sixteen year old with significant disabilities I can honestly say that it gets easier and it never gets easier. You are so right that much of the time, ignorance rules. What a blessing for all of us that you can make an impact by speaking up with your fellow pharmacy students. Keep writing, keep talking and stay courageous!

I think you hit the nail on the head when you said "They just don't understand." Now, it's up to you and all of the rest of us parents to educate those around us.

I think it's wonderful that you are back in school. Although I don't know you, I have a feeling you are going to be just fine. :)

Thank you Elizabeth and DeeAnn for your kind words! Many of my pharmacy school friends have read this and I've received so many encouraging messages from them. I guess all it takes is a slight change in perspective.

Elizabeth, I think I've been reading your blog on and off for awhile now. Your daughter is beautiful. Thanks for writing.