Tuesday, July 21, 2009

Culture and Down Syndrome

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 Most women at best will be given the diagnosis, some outdated information, and then sent off into the world with absolutely no support.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?

8 comments:

I AM NOBODY said...

Assalamu Aleikom wrwb

MASHAALLAH! What a beautiful family and a beautiful blog. I have only just begun reading and am learning so much! I also feel the need to go back and edit a post or two of mine for using terms that may be offensive..it's this ignorance you speak about that people often times don't realize until they've been educated and then, then we can look into ourselves and make the changes.

I truly admire you! You're strength and beauty as a Muslim and a Mother. MashaAllah!

May Allah swt bestow His swt blessings upon you and your family always and keep you all in the best of health and Iman. Ameen

Now about the culture thing? I cannot tell you how many times my husband has asked about a certain disability and said "they don't have that in Pakistan" as if? I will sit there and argue with him non stop that people all over the world can have whatever it is we were talking about. It's very hard to get this through his head? It's like you mentioned here about that lady from Lebanon...perhaps these people really are invisible? Astagfirulluh!

Anyway, I will get back to reading and definitely make Dua for you and your family.

Your Sister

Sonia said...

Hello! My mother was born and raised in Korean and didn't know anything about Down syndrome until Lillian was born. I'm pretty certain, that in her community, it's very rare and really never discussed. Almost like it is bad for the family.

However, I am very proud of my mother for learning about it and understanding it. But, it's still hard for her talk about it with her friends. I'm pretty certain that they don't know about Lillian having Ds. I do know how much she loves her, but I'm certain there is a big cultural divide when it is about any disability.

Anyways...I think little Yusef is so cute, as with your other children. Such a beautiful family.

I hope to learn more about you and will continue to read your blog!

Sonia

Stephanie said...

I am Nobody and Sonia--Salam Alaikum and thanks for stopping by! It's always interesting to hear other people's stories of the different perceptions of DS (usually not good unfortunately). Thanks for sharing. :)

Anonymous said...

Hi my dear, I am an Indian and I reside in UAE with my fly. I have 2kids, my elder child has DS. When i gave birth I went numb when i heard about my childs disability, but believe me your child will prove that all the negative comments and all nonsense that people and including doctors talk about them is false. My son started riding the bycicle within the premises by 2.5 years. Dont listen to negative comments. I know some days are quiet frustrating and I do go into depression but my God helps me overcome things and I start motivating my child like anything. Keep checking the net, and you will be amazed, they can skate, swimm, ride a scooter, go for jobs be independent compltely. The only thing that hurts is the awkward glance people give your child because of the unique features. But otherwise they are damn naughty, my elder one bashes my younger one like anything.

Suba

Carimah said...

As'salaam'alaykum
Masha'Allah - I am enjoying your blog. And Masha'ALlah that you have a DS child. Our Islamic understanding is that your son is a gift and will be granted Jannah automatically. I am sure your days are tough and it must be really hard to see your child have seizures, but know that he is a little angel and will be in Jannah one day. INsha'Allah I will keep you nad your family in my duahs. Ramadaan Mubarak. umm Aasiyah Muhammad :-)
{HUGS}

Stephanie said...

Salam Alaikum suba, carimah and IAM
thank you for your comments and please come back...
suba--thank you so much for sharing a piece of your life with your precious child ;)

Anonymous said...

From what I read, Down Syndrome is not very well accepted, culturally, in most countries. My guess is that the further you get from the so-called first world, the worse the misperceptions about DS and the worse the treatment of people with it. Even among highly educated folks in the US there is a lot of ignorance. But in the more backward parts of the Arab world, the word "enlightened" is a joke, and "educated" isn't something pushed much for women. I believe my daughter is probably better off living with DS in the United States than living without DS as the burqa-wearing 4th wife of some Afghanistan hillbilly.
Sincerely,

Ray Stern

Angela Abraham said...

Hello my dear sister,

I just stumbled on your blog today, and read your piece and questions on DS in other cultures. My husband is also Arabic, and I am American. Most children in the Middle East who are in anyway "different" are basically hidden from the shame of it. However, there are families who are being proactive in trying to change this, thanks to God! I have a friend in Central Asia, a rather isolated area, who told me that they see children who have DS as a special blessing from God, and that the mother who has one is considered especially honored by God to have been given a gift! They call them Sunshine Children. My little fellow with DS is indeed a Sunshine child who is a gift and a blessing to our home.

I give you my respect for trying to handle these issues respectfully, as we have to recognize that each family we encounter who has less than respectful attitudes about our children are only acting in the light that they have. Our job is to help shed some new light in their lives!

I am proud of you! May the Lord bless you and your little one!