I originally posted this on my other blog here. If you want to check out the comments,there was some interesting discussion.
I never though I'd be a mother of a child with special needs. Now that I am in this place, though, I've taken it on as somewhat of a personal mission to educate people about Down syndrome in particular. Within the Down syndrome community it is generally thought that most Americans are very ignorant about Down syndrome and it is seen in a very negative light. Yes, this is true, and the most stunning example of the prevailing attitudes can be displayed in the atrocious termination rates of fetuses that have had a positive diagnosis (either by amnio or cvs). These rates are believed to be at about 90%. This haunts me. The reason most women give for having an abortion when they find their baby has Down syndrome is they don't want their child to suffer. I've heard that one over and over again. I don't believe it for one second. In truth , I believe that these parents fear the stigma of having a child who is different; a child with cognitive delays and a set of physical characteristics that are outside of the norm. Many might think raising a child with Down syndrome will just be too difficult and aren't willing to sacrifice any piece of their perfect life in order to raise an individual with DS (yes I am bitter). Unfortunately, the medical establishment has been known to encourage termination on expectant mothers. Most women at best will be given the diagnosis, some outdated information, and then sent off into the world with absolutely no support.
So yes, the average American isn't very educated about Down syndrome, but we do have many organizations here that work for the rights of individuals with disabilities. Parents with children of Down syndrome are very, very vocal about advocating for their kids well being. They're also extremely proud of their kids and will put anyone in their place who might make a disparaging or insensitive remark. Kids with DS start early intervention therapies as young as two weeks old to increase their potential. Many groups and brave individuals have fought the good fight to allow their children inclusion into the education system, right alongside the "typical" kids. Along with medical advancements to treat any underlying health issues, kids with DS can live up to their potential and exceed all expectations.
This brings me to the Muslim community. Since my husband is Arabic, this is (besides the American converts) is the ethnic group that I know the most. I've found that for the most part the Arabs I have run across know very little about DS and although no one is rude will sometimes say some very ignorant and insensitive things.
Caution: VENT ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Just this evening we had dinner with a very nice couple and we started to talk about our little Yusef. First off, alot of people from the Arab countries don't even know what DS is, at least by that name. They call individuals with DS "mongoli" or the English translation "mongoloid". This in itself is an extremely offensive and racist term to use, and isn't used in the US anymore because of those reasons. I've gotten used to that term and I can't really blame people for that if that's the term they know. To me it's just a reflection of how far behind their society is in thinking about this particular issue. So anyway, when my husband told them that Yusef was a "mongoli" the man got the most disgusted look on his face and stared at my son in disbelief.
Ok, I know he wasn't trying to be rude, but my protective motherly instincts went into hyper drive at that point.
The man : What causes this?
My husband: The women's age.
Me: Uh, no, that is not a cause, only a risk factor. The chance of having a baby with DS goes up with maternal age, but even a 20 year old can have a baby with DS. It's a random occurrence where a child receives an extra 21st chromosome during conception. blah blah blah...
Man: My mom had her last child at 43, she was fine.
Me: Stares at him
Man: Maybe it was something in your house.
Me: My head explodes and with what was left of my mouth I say: This is Allah's will. We should say alhumdullilah (All Praise is for God).
Seriously though, I've got a whole variety of responses. Some people imply that maybe Allah will cure him. Well, first of all there is no medical cure for DS. You can't just remove an extra chromosome that resides in every cell in his body. That would be like removing the gene that says you have blue eyes, or are a male or a female, or whatever. There has never been in the history of the world a case of Down syndrome being cured. Obviously, God can do as he pleases by just saying "Be", but my son already is a miracle. As Muslims we believe in submitting and accepting the will of God. The fact that my son was born to me, extra chromosome and all, is His will. Why are you questioning it? Why is this an imperfection something that needs to be cured?
An way, back to culture. I was once told by a woman that had spent alot of time in Lebanon, that it's almost like people with disabilities are invisible there, like they don't exist. I have never been to the Middle East so I have no if this is true.
Just curious for those of you out their from other cultures, or familiar with other cultures or countries, do you find this type of attitude in said place or among said peoples?