To ask any one of Pakistani descent (Urdu speakers) to please talk about this frankly with me?

[Mebeline]

hi there
I am genuinely trying to understand a conversation i just had with a woman which was loosely related to my professional role. Please don't flame me, I am trying to be actively non-racist after BLM and I am just trying to learn more about cultural norms and values that differ to my own.

She explained to me that her son has a genetic disorder due to 'cousin marriage' in her words, which means that the whole family have weak bones. she went on to tell me that she refused genetic testing , because she was scared about how her husband would react, as she was newly married and her son was young. so she refused genetic testing and so did her husband. I am not sure if relevant, but she has gone on to have another child and is pregnant with a third. She did not tell me if her second child had similar problems as her first.

i do not understand why she would refuse to have genetic testing, and i didn't want to ask further as what she had brought up is not relevant to my professional role, and i did not want to go outside of the boundaries of why she was speaking to me and encourage over disclosure, which she may have later regretted.

Was she afraid that her husband would leave her if her 'genetic material' wasn't good enough?

Surely this is misogynistic abuse? i do not want to collude with this and very much feel as a feminist woman that it is not fair that a woman of colour is experiencing this level of oppression.

Please, to allow this thread to run, can posters avoid racist stereotyping? I am very genuinely asking anyone of Pakistani descent what is going on here and if there is anything i can do to better understand this woman's circumstances and reasons for her actions, and then if there is anything i can do to help her.

TIA

I'm not from the background you want but could it be that they were in love and if they'd been tested and find to both carry the genre they would have known the likelihood of passing the condition on and this out was not a good idea to have children? This way they can claim ignorance.

If the whole family already have weak bones, do they really need to be tested?

its not just weak bones - quite serious developmental delay

Well, there's not a lot she can do, is there? She can't exactly put the kids back in!

She's aware of the issue of consanguity at least, but I'm not sure what additional benefits tesyi g would bring. It's not just women from her background who are stuck in marriages having to make the best of it.

my point is why would she be afraid of her husband in relation to the test?

ok, but this does seem to be culturally specific, does it not?

karmanirvana.org.uk/

@Mebeline

my point is why would she be afraid of her husband in relation to the test?

I’m not Pakistani but I’m assuming there are all sorts of potential reasons why she would be afraid.

Just like British woman can be afraid. And American. Irish, French, Spanish, Nigerian, Chinese...

How could strangers on the internet know why?

@Mebeline

my point is why would she be afraid of her husband in relation to the test?

Probably because she is afraid of him in general. It would be highly unusual for a woman to feel completely safe and supported universally in her relationship, except for one area, without that basically being a giant red flag for abuse.

Cannot possibly say. Only thing I can think of is that maybe her husband does not believe in the results so did not want them done. Some people believe that these kind of tests are just scaremongering.
I think it is not down to race though.

Just that husband might have more of an entitled say and the wife herself is someone that does not like to rock the boat ie a bit timid.
She has obviously gone along with it if she is onto her 3rd!..

I'm not sure what explanation you are looking for, people of all backgrounds can have all sorts of reasons. I'm from a Pakistani background and I wouldn't have a clue about her reasons. Not everyone of the same background has to think a similar way right?

Also if she is not originally from this country as it seems then she is probably just following her husband's cue. He is the one who would have more knowledge on how these tests/ this country works.
So she may have blindly followed him but not told him about her doubts.

You should watch "When cousins marry" by dispatches, it was originally on Channel 4, not sure if it's on catch up but it's available on youtube.

Not Pakistani, but some things coudl be
-genetic testing might show that she is a carrier of something, and therefore the child's difficulties are her fault.
-genetic testing might show that any further children will also have this issue, which means that they shouldn't have any further children which might prompt a divorce
-genetic testign which puts any blame on her or her family might lead him to disown the child(ren) and refuse to support them

I would imagine that she is worried that he will leave and she will be left bothe humiliated as a divorcee and without support for the children.

But it could also be due to faith and belief, that the genetic testing won't make any difference, if it is god's will we have kids, then we will have kids etc. That testing interferes with that.

I'm from a very similar background, not Urdu-speaking. It is very difficult to answer this question without knowing more about this woman, the cultural code she is part of, her relationship with her family, her level of education. I say this kindly, but I feel like the speculation in this thread is akin to me assuming a white woman worrying about which meal to prepare for her husband is almost certainly worrying because her husband will beat her if she chooses the wrong one.

Thinking about some members of my family, who live in a more deprived area of the UK and didn't prioritise education, genetic testing might sound like paternity testing. They might refuse this because of the implication their husband wasn't the father.

Added to that, 'cousin marriage' is really common in some cultures (anything else would be severely frowned upon, at best, in some circles) and there might be a resistance of being judged or being seen to agree that cousin marriage leads to birth defects. Despite the scientific fact pointing to this, culturally this might be seen as very taboo/world-shattering.

Again, to emphasise, I am speculating based on just some of the very varied and diverse reasons there could be for this particular situation, based on my own family members/friends/community.

If you are genuinely worried she is in an abusive marriage, are you in a position to be able to watch for other signs?

I’m not from this culture but I have refused genetic testing for breast cancer genes even though I could have the gene and can access the test. This is because I have evaluated the risks and the issues and I’m happy not to be tested. I have a little girl and if I carry the gene I may pass it on to her but it wasn’t a factor for me.

One extra reason for being afraid of her husband (apart from him probably being an abusive twat) is that he might take that as a slur on his family and/or as a criticism of their marriage (assuming they are cousins).

It's not that marrying your cousin causes developmental delay, but it greatly increases the risk that your child will inherit any condition you have and in the case of the Bangladeshi community, this is well known. He will have heard that before, he may not have wanted to believe it, he may get very angry when this criticism (often coming from outside his own community) is now confirmed.

And people even outside this context often do get a bit defensive about genetic disorders. My mum spent a lot of time trying to argue that dd's condition- of which DM exhibits unmistakeable symptoms and dd's dad none at all- must have been inherited from my dh because "he walks funny". Also, if we'd only lived in my country of origin it wouldn't have been a problem because dd would have got diagnosed properly and been fine (seriously, she wouldn't). DM just couldn't cope with the guilt of having passed on a serious condition to her granddaughter, she took it as a criticism of herself, so she just had to blame it on somebody else.

And when it comes to not wanting to know- I'm torn. Of course I would see it as my duty if I knew now to have the tests and then probably decide not to have children- but there is a part of me that is just so grateful that I didn't know and dc are here.

And I don't even come from a culture where there is that much pressure to have children or that much difficulty in explaining why you're not having children.

Mostly it seems cultural pressure and denial, she probably is well aware that interbreeding over an over again is why her family has medical issues but it is expected and she will just keep having babies.

Having met people from this background (repeated cousin marriages, causing 11 out of 13 babies to be disabled for one couple) it is really ingrained in them that this is normal. If they have one healthy baby then that means all the doctors are lying.

Certain parts of the UK have much higher stats of consanguinity caused medical problems just because of this. Even the very basic issue of extra fingers etc. Eye issues are also much more common. I have family members in the medical field banging their heads against the walls. These poor children really don't then get the care they need as they are one of many, it's really unfair.

Pakistani here, also Urdu speaking.

Her reasonings could be anything if I’m honest and probably nothing to do with our culture.

Some (not all) Pakistani families tend to marry people who originally came from the same area of Pakistan, and may be distantly related. Over time this increases the chances of genetic conditions.

It is a deliberate choice to marry people from the same background/extended family - so I think it very unlikely that she would be worried her husband would think her genetic material isn’t good enough.

No idea about the reasons why she would be worried about her husband’s reaction. Maybe he’d be upset that their children will have genetic problems?

And as others have said, they’re already married and have children, there’s not much they can do about it now - so they might not want to know.

Well I declined testing in pregnancy (not high risk) because I wouldn’t have terminated the pregnancy unless there were abnormalities incompatible with life, and they’d have been picked up at the 20 week scan.

Cousin marriage is exceptionally commonplace within certain cultures, and accounts for the high disability rate within these populations (there was a large scale study done in....Bradford(?) a few years ago). There are a variety of reasons people choose to decline testing, many are cultural but some are religious. Some people just don’t want to know.

I know you’re actively trying not to be racist but that has to include not imposing your beliefs on them. Being a feminist has to include letting other women decide for themselves what is best for them. I wouldn’t say this is misogynistic abuse simply because you do not know the situation well enough to comment.

ok thanks for the interesting reponses - much appreciated.
@steppemum that seems a good summary. I will as well watch the documentary suggested.

i think it is a cultural issue if she was divorced and then left unsupported and shamed, what a dreadful consequence.

And surely this is therefore a feminist issue as well.

Here's the link, it is very insightful, also rather distressing to see the lack of care some women have for their future children.

Apparently more than half of British Pakistanis marry their cousins

@ims0rrydarlingg

Pakistani here, also Urdu speaking.

Her reasonings could be anything if I’m honest and probably nothing to do with our culture.

thank you thats really helpful know.