pregnancy, disability and culture

Before you read this next post, know that all is fine with baby. My Ultrasounds have went well and things seem to be going smoothly.
However, this does bring up a subject that I have written many draft posts about and have to consolidate them into one thought provoking post. As if I just can’t get off of these three topics: it is about pregnancy, babies and disability.
During this pregnancy, we have been confronted several times with the possibility of having a disabled child. First, let me say that my blindness is not hereditary (although who would know unless they asked) and DH’s blindness comes from a recessive gene that both parents must carry. [Which means that his two sighted parents both carried the gene that caused their blindness: but I am not blaming, just making a point]. But, everyone wondered what we would do if the child was blind. Or, worse: what if the child had Downs Syndrome?
[Sidenote: t the BBC presented a documentary called “the education of….” (sorry can’t remember his name) which is about a man who has Downs Syndrom and who is going to college. i have conflicting views on this, but it is an interesting documentary, if you are so inclined].
Anyway, After all, I am an older parent and the likelyhood of a child with a disability increases with the parent’s age (specifically the mother’s).
DH and I talked about it several times. Neither of us even considered abortion. What I did not ask him was: “Would you have considered abortion if I was younger and the possibility of me having non-disabled children was likely?” I didn’t think of it then, but it is kind a “what if,” question and he really couldn’t answer it because it would never happen. Already he does not like playing the “What if,” game, especially when there is no way that it will happen. He said that if the child was disabled, he would definitely want to raise it here in the USA.
Now, don’t get me wrong. I would certainly go through the stages that every parent must go through when they are faced with a child that has more challenges than most. I would probably deny, grieve, accept and finally advocate. I don’t know how long i would be in each stage and know that it is certainly an individual experience.
But, When I talked about having the child and then meeting the family for SIL’s wedding, DH felt quite uncomfortable. Although he would want to show off a non-disabled child, he would have a problem feeling the same type of pride toward his disabled child. (my thoughts) He says that it is not a pride issue. He just would not want to deal with everyone’s comments and pity. He also says that other children are not very nice to disabled children. So, I guess you have lots of people who are either afraid of disabilities and/or say stupid things. And, you have unrelenting children whose parents don’t teach them how to behave. Yet, this does not match with the stories about his and his sister’s childhood.
Hearing stories from DH, I find out that he was quite the mischief maker. When they were little, DH and his sister, who is also blind, loved telephones and radios. OK, it was probably more of DH than his sister’s love; but his sister was dragged in by association. DH would not hesitate to scope out a neighbor’s or relative’s house looking for a telephone to call his friends. “permission” and “telephone charges” were not words in his vocabulary. He talks about exploring everyone’s rooftops and jumping/swinging from one house to the next. Before (and even after) he knew about blind cricket, he and his cousins would modify the game so that he could also play. He was fascinated with the light and bright colors surrounding fireworks and on several occasions despite his mother’s protests, burned holes in his clothes because he was not careful while playing with them. Often, he would go out with his cousins or neighborhood friends to the market and with his father to the Mosque. DH felt that many times, his father was more strict on him than on his younger brother. As a result, Dh feels that he is much more disciplined and mature than his brother. His sister, the one who is blind, is the first born. There are family legends about how proud his father was to have a baby girl: so much so that he carried her “everywhere he went.” Their father was not satisfied with the Government run blind schools and continued to search for better educational opportunities for his blind children. And, of course, the two children that received the opportunity to study in America happened to be the two blind children. Yes, there are discrepancies in how his father treats his sighted children, verses how he treats his blind children. Yes, they, his parents, were worried that we would surely pass “blindness” to our child and wondered how we might tackle the challenges of parenthood. And, yes, I agree that society is not very welcoming. But, all in all, his family seemed to rise to the challenge of having blind children. His family did not hide them away in a room or an institution. Yes, there was the many “faqirs,” “healers,” that people would suggest to Abu so that they could heal DH and his sister. yes, blind beggars are not uncommon in Pakistan. I think that there were some family members who blamed the mother for their blindness. (don’t quote me on that one, I am not sure). And, certainly, there is an overwhelming focus on the medicalization of the disability instead of more of an acceptance/independence approach. But, honestly, I see it here, in America, also.
Interesting fact: when I was a child, I was stopped many times on the street and without warning, people (Pastors or preachers or all types of religious folk) would place their hands on my head and/or face and begin to pray for me. They were sure that God would heal me, right then! When a healing was not forthcoming, they either took one of two approaches. 1. Encouraged me to continue to pray for my sight because it would happen in God’s time. Or 2. Chastised myself or a member of my family for having little faith. (what a way to bring souls to God)! Interestingly enough, DH reports that there are times when people have stopped him on the street and asked “HIM” to pray for “THEM” because prayers from a blind person are suppose to be more effective. And Lest we think that America is superior in the disability department, a friend of mine reports that a pastor of a church that she (still miraculously) attends has told her on more than one occasion that she will not regain her sight until she stops sinning and becomes serious about her faith.
Alright, honestly, I admit that many (especially those in smaller villages) Pakistani parents are probably ashamed of their disabled children. Many don’t know about Braille and/or how to teach their blind children. There are not as many services for blind (or other disabled) individuals. There are not that many employment opportunities for blind or disabled people. Remember, Dh still wants to start that Braille library: so obviously, Braille material is not as easy to obtain. Yet, hope still abounds. And, it seems that the challenges center around the lack of information more than anything else. And, honestly, maybe DH wold just have to go through those stages listed above and “right after birth” is just too soon for him to be in the “acceptance” stage. But, we will not really know unless it actually happens.
But, i still ask:
1. Would you/ Did you get any genetic tests to identify an unborn child’s disability? If so, would you have terminated the pregnancy? Do you and your DH have different views on the subject?
2. What are your family’s views about people with disabilities? Is there a hierarchy between physical and mental? Do they differ from your DH’s family’s views?
3. Would you be hesitant to bring your disabled child to your DH’s country?
4. Has your or your DH’s views on disability changed over time? How?

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One Response to “pregnancy, disability and culture”

  1. Roshni Says:

    Yet another fantastic post Jan! you really do get to the heart of the issues! This is one topic I’m very passionate about, and not just for the obvious reasons!
    Sadly; the misconceptions about disability are not just limited to Pakistan; many south-Asian communities have brought those views overseas with them; and this affects my own area of specialty/work. Over here, the instances of disabled Muslims suffering sexual abuse, neglect, violence and isolation are significantly higher than within the mainstream, and many actually leave the religion of Islam because of what they see as the community rejecting them entirely. Lack of facilities is one thing; but I think it is attitudes that really have to change before things will ever become better. You have already seen how your approach differs from that of your husband, and I think you will find that the impact you will have on your in-laws, whether the child is disabled or not, is actually allot more powerful and changing than you perhaps realise!
    To my own personal situation; yes I would have genetic tests; but no; they would not influence me to terminate my pregnancy! I don’t know how my husband will react though; I don’t think he knows himself! we have discussed it many times, and his view has always been “leave it to Allah!”, that makes sense to me, however I’m a bit more inclined to the physical and spiritual working hand in hand! My in-laws have been supportive and accepting thus far, so I guess we sit tight and pray for the best! One thing is for sure; if your child did have a visual impairment; there is no one better placed than you and your husband to raise that child! You know its needs, you know how to avoid the barriers and discrimination you both faced; that has to be a wonderful thing!
    My prayers are with you both; you seem a strong couple and family and I’m sure whatever happens, you will get through it, and be stronger as a result, keep us posted!

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