NOTE TO READERS: This experience happened about 3 weeks ago. I was so worked up over the incident, I decided to table this entry until I could be more objective about the experience when writing. I believe taking a moment to step back and let things 'settle' was a good choice - if for no other reason than avoiding a blog riddled with curses and spewing with venom. So, please realize that this post is severely subdued compared to the 'day after' emotions I was having. Do not think I don't take this sort of thing lightly. I do. However, I refuse to let the indignity of such behavior taint who I am as a person and how I allow my children to see me react to such situations.
I consider myself extremely lucky when I say that in the four years that Jacob has been a part of our family, I have never once felt as if he was discriminated against or treated poorly.
We have been truly blessed with the people we've come in contact with from the moment I discovered he had Trisomy 21 before he was born up until this afternoon.
I'm ashamed to say that when I perused the Down syndrome message boards and listened to parents vent and scream about how cruel other people were to their children, I thought they were merely thin-skinned and needed to toughen up a little. People aren't actually out to discriminate us, they're just ignorant, right?
After today, I must take pause and wonder.
In just a few short weeks, my 15-year-old boy begins basketball. A prerequisite, as I'm sure is required in every school across the country, is a sports physical to ensure that he is physically fit enough to participate in the strenuous activities associatated with high school sport.
A couple years ago, my family physician's office was bought out by a major corporation. In fact, so was my pediatrician's office, our urgent care office, and nearly every other medical facility in our city. About 90% of every medical facility (hospitals included) are owned by one of two major Corporations. Seeing as how I'm about to rant, I will not name names so as not to be slapped with a stupid defamation lawsuit. Grrr.
From the moment the physicians were bought out, we were no longer able to make an appointment with our doctors and get in to see them same day...or within the week...or even within the next two weeks. On average, we must wait 3-6 weeks before we can see our physicians. I made an appointment to have Jake's eyes checked today (December 4th) and they will not be able to get him in before February 24th. See what I mean?
That's fine. Whatever. We'll go to urgent care when the kids are sick then, right? You'd think so.
I found out about my older son's need for a physical 2 days before it was due. Great. Urgent care, here we come. We show up 2 hours before they close, and are immediately given crap. No. They won't accept insurance. We must pay cash for a sports physical - even though the sign next to the receptionist clearly says that co-pays are expected. Oh, wait. It's 5:45 pm, I'm not sure the doctor will even see you because they stop doing sports physicals after 6:00. Um. it's not 6:00. And where did you post the allotted times for sports physicals? I was on your website. I'm in your lobby. Nothing. I'm not a mind reader. Work with me here. Plus, it's a SPORTS PHYSICAL. Listen to his heart, weigh him, check his blood pressure. Sign the piece of paper. We're on our way in less than 5 minutes. It's the easiest $50 this doctor is gonna make tonight.
The receptionist takes our paperwork - already filled out and waiting to be signed by the doctor. We wait in the lobby for 35 minutes to find out if they will even TAKE us. The nurse opens the door and motions to my son and I to come. We step behind the door, she closes it, and then proceeds to tell us that they will not see my son.
Because we checked a little box that said our family had a history of heart problems.
I proceeded to tell her that the "history" was Jake. Our 4 year-old with Down syndrome. Those heart issues were directly related to his disability and did not increase Nathan's chances at having heart issues. It had everything to do with Jacobs extra chromosome - which Nathan obviosly does NOT have.
I kid you not, when she heard that Jake had Ds, she sneered. I was pissed. She then told us it was policy not to do sports physicals when the family has a history of heart issues. I again repeated to her that Jacob's heart defects did not increase Nathan's chances of heart issues. I asked her very nicely to relay the information to the doctor and ask that the doctor make an exception.
A new nurse called us back. She again told us that they do not do sports physicals for people whose families have a history of heart issues. I relayed the same thing to her about Jake and it not increasing Nathan's chances of having issues. This lady made an even nastier face than the first nurse and repeated the policy. I asked her if she spoke to the doctor. She repeated the policy again and told us that they are an Urgent Care facility and that this was not an urgent care issue - we needed to go see our family practitioner for such matters - someone who knows our family's medical history. Then she told us that they will not serve patients who have a family history of heart issues.
She opened the door, and essentially kicked out out of the building, refusing to see us. Why? Because Jacob has Down syndrome. My 15-year-old son who has NEVER been seriously sick in his life. EVER. was denied medical treatment because his little brother had Down syndrome. Our entire FAMILY will be denied medical treatment from that Urgent care facility - and every other facility holding that company's name (remember, they own nearly half of all medical facilities in our town now) because Jacob has Down syndrome.
Discrimination at its finest, people.
You wanna know what the funny thing is though?
This urgent care facility has essentially been our primary care provider for the past 4 years. They've been seeing our entire family - including Jake (who, by the way has a giant scar down the front of his chest from heart surgery, so there was no hiding his heart history) - whenever we were sick. They KNOW our family history. But because we checked one tiny little box, information WE VOLUNTEERED, we now had the plague. No touchy.
I went home livid, to say the least. I ranted to my husband. I called one of my dear friends who also has a child with Ds. I stewed. I got madder.
I have decided that this is not over. I am a mother of a child with Trisomy 21. If I do not stand up for him and my children, I'm allowing this behavior to perpetuate. I'm allowing this company to continue to discriminate.
This week, I will be writing a letter to the company's corporate office. And I will be writing a letter to the urgent care facility, and I will be contacting our local, regional, and national Down syndrome coalitions. And then I will be contacting an attorney.
Do I want money? No. Do I want retribution? No. Do I want an apology? Not really. I want the policy to CHANGE. I want people with disabilities - AND THEIR FAMILIES - to be treated just like everyone else. Isn't that what the American Disabilities Act is all about? Equal rights?
Quit punishing us for having, and loving, a child with disabilities. Let us make our own choices - quit making choices for us. Quit trying to treat us like degenerates or second-class citizens. Because we AREN'T.
If anything, children like Jacob make us better people. Jacob is a blessing. Nothing less. And I will not allow anyone else to treat him otherwise.
Now...off my soapbox. I have some work to do. :)