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Re: Not married - no kids - disability choice [Re: WestCoastDenise] #412434 04/28/08 07:49 PM
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SORRY FOR THE LONG POST! I hope it will provide some insight for those who are interested.

Let me say first of all that the MAIN reason my husband and I will not have children is because we simply don't have the desire.

My post is only to provide some insight into one situation and not to say what one person or another should do, each case is different (in the cases involving genetics and knowledge of a disease or disability).

Adding to that, as someone who has had and whose husband has also had bone cancer (different types, but both bone) I do not believe that for us it would be responsible to bring a child into the world when we have both had diseases where there are hints of a genetic link, but really how long is it since a fair number of people have been surviving cancer, so how much research do they actually have? Also, mine in particular was rare with not a great long term (5-10 year) survival rate, so it's not like they have a large number of survivors to study the genetic outcomes of. Because of the diseases we have had, my husband has a leg that has had some of the bone and knee joint replaced with metal etc, which leaves him with some disability (cannot physically run, muscles missing etc). I had a stroke during one of my surgeries and because of this I am left with the entire right side of my body much weaker than my left. We both do just fine, but it is harder for us to get around physically than those who have not had any injury or illness.

So - in relation to Genetics, there are two main points in our decision and those are.

1) Advocating for the would be child - This point being about not bringing a child into the world knowing that they may have an increased chance of developing cancer.

Whilst for both of us Cancer has been perhaps (for want of a better phrase) the best thing that has ever happened from the point of view of being developed as an individual I guess. FOR US we could not make the decision that a child of ours went through something similar because of something in our genes that made them suffer illness.

2) Taking care of ourselves - Because of the disability we live with and may face in the future because of the illnesses we have faced.

Because of the illnesses we have had we have had heavy treatments and there are many late effects from these treatments that could impact our lives in the future. As I already mentioned we both live with disabilities because of our illnesses and these may have more of an impact the older we get as we were just 18 and 20 at the time of treatment (we are now both 26), so were in prime age to fit disease and potential disability, with age it is likely that these disabilities will have more of an impact on our lives than they currently do.

I hope that provides some insight and understanding into the decision of one couple. For me, it is not about blanket statements on whether it is right for certain people to have children. It is up to the couple involved to make informed decisions about if they feel they are equipped enough to care for a child who has an illness of disability. I am referring to making this decision before conception and to some extent before birth. Not to cases where an illness or disability is unknown until further down the track. I do think that people should actually actively make these decisions, consider the welfare of all involved and make an appropriate decision, not just ignore something they know is there. An appropriate decision being one that they can live with - not other people, there are plenty of people that tell us we have no reason to not have children, we beg to differ and like I said, do not see it as responsible.

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For New Visitors: This forum exists as a support community for people who are living a child-free existence. This area is here to help nurture, inspire and educate those who, for whatever reason, are living their lives without children in the home.

Posts made here must be supportive of this lifestyle choice. Comments should not question a person's decision to or reasons for being child free. Those negative comments are called "bingoing" or "trolling" and are not allowed. Please be sure you are aware of this forum's intentions and rules before posting!

Re: Not married - no kids - disability choice [Re: Taitinfae] #412448 04/28/08 08:22 PM
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Originally Posted By: Taitinfae
But I don't think the issue is a person with "x" should not be allowed to live. It's knowing that you could create a person with "x" and willingly do so.


Intellectually this is certainly true. Emotionally, if you have a loved one with trait X, and you begin hearing people talking about embryos with trait X being flushed, it strikes a painful emotional trigger. For many people, every life is sacred, in whatever configuration it happens to be in.

If we say 45% of the US is pro-life, that is 150 million people. So not a small number.

Just something to think about, when people phrase discussion points.

Re: Not married - no kids - disability choice [Re: DolphinLvr] #412449 04/28/08 08:23 PM
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Here is an extremely interesting take on this issue from a Columbia professor. The article talks about genetic testing, issues such as Down Syndrome, and abortion.

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Re: Not married - no kids - disability choice [Re: DolphinLvr] #412459 04/28/08 08:41 PM
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But this is still assuming the child has already been conceived, which I feel is a very different issue. I feel that aborting a child with trait "x" is different than choosing not to get pregnant because you have trait "x".

Re: Not married - no kids - disability choice [Re: DolphinLvr] #412460 04/28/08 08:44 PM
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This is a tough but interesting issue. My husband's family has polycystic kidneys, hereditary. By the age of 40 or 50, the kidneys fail. My husband, his brother, his mother, have had kidney transplants.

Should he have not been allowed to come into this world and give me the joy and love that he has, that's a really tough call.

Last edited by WestCoastDenise; 04/28/08 08:45 PM.

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Re: Not married - no kids - disability choice [Re: WestCoastDenise] #412464 04/28/08 08:58 PM
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It is hard and it's one of those choices parents have to make. I think it is different knowing a person and saying what if this person had not exisited than if you have not even conceived. I think it is also different when you look at a person who is happy and has a great life in spite of any physical or mental disabilities or diseases.

What about the child that only lives to be 6 and has spent those years in the hospital having surgeries, has never had a chance to be a child? Should the parents have opted to give their love to a child that already existed? Or are those few moments of love and happiness worth it? And how would you ever know ahead of time?

Not to mention everyone has different opinions on which disabilities/diseases are livable (not sure if that would be the right word but my brain is not coming up with a better one)

Re: Not married - no kids - disability choice [Re: Taitinfae] #412498 04/28/08 11:15 PM
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People keep saying "who should be allowed" or words to that affect. I'm not for banning people with x disability from procreation, I just think potential parents really need to think about it first. The reason why most CF people I know are CF is because they think about things more than the average person does before they make decisions.

So, no, I can't tell you that you should not be allowed to have a child because you carry x gene, but I (me personally) could not morally create a child knowing I would run the risk of passing something on to her that would make her life harder to live with, painful, require surgeries, etc. For me, this would be a sin.

This is the same way I feel about in vetro fertiization, BTW. WIth so many children in this world who are already here and need families to love them, dropping bucketloads of cash to create your own baby seems wrong and selfish. I would feel like a sinner for doing this. On the other hand, my very good friend did it and has two wonderful children who I love to spend time with. It worked for her. I'd never tell her that what she did was wrong, because it wasn't wrong for her. It would be very wrong for me.

Different strokes.


"The world might be considerably poorer if the great writers had exchanged their books for children of flesh and blood." ~Virginia Woolfe
Re: Not married - no kids - disability choice [Re: prugie] #412519 04/29/08 12:07 AM
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Originally Posted By: prugie
SORRY FOR THE LONG POST! I hope it will provide some insight for those who are interested.
<snip)
Because of the illnesses we have had we have had heavy treatments and there are many late effects from these treatments that could impact our lives in the future. As I already mentioned we both live with disabilities because of our illnesses and these may have more of an impact the older we get as we were just 18 and 20 at the time of treatment (we are now both 26), so were in prime age to fit disease and potential disability, with age it is likely that these disabilities will have more of an impact on our lives than they currently do.

I hope that provides some insight and understanding into the decision of one couple. For me, it is not about blanket statements on whether it is right for certain people to have children. It is up to the couple involved to make informed decisions about if they feel they are equipped enough to care for a child who has an illness of disability. I am referring to making this decision before conception and to some extent before birth. Not to cases where an illness or disability is unknown until further down the track. I do think that people should actually actively make these decisions, consider the welfare of all involved and make an appropriate decision, not just ignore something they know is there. An appropriate decision being one that they can live with - not other people, there are plenty of people that tell us we have no reason to not have children, we beg to differ and like I said, do not see it as responsible.


Thank you for your explanation.

I believe that the concerns you have for children who may be born with or have a greater likelihood for developing special needs are the same that you would have for potentially typical children - even without the health challenges that you and your partner have faced in the past.

You have a perfect right to decide whether a child or children would be the right decision for you or for them. I am sure that there have been discussions here about many reasons to choose not to have children that are thoughtful, valid, and admirable. And there's nothing wrong with more selfish reasons - no one needs more justification than to say they choose to be 'child - free' - although of course that goes hilariously or tragically wrong with families and friends who want you to give them grandchildren, nieces or nephews, or just share their child rearing adventures.

Individuals with disabilities add to the rich mixture of diversity that helps the world celebrate, recognize and solve problems, provide leadership, companionship, and opportunities for compassion and spiritual growth - everything that each of us has the capacity to do, in our spare time. By the subject line and your original post, I was not sure if you were taking a potshot at children with disabilities as reasons for adults to choose to be childless - as if the birth of a child with a disability would be a fate worse than death.

All children who are born know misery, suffering, grief and loss - and preventing each one's birth would save them from the human condition. To attribute the miseries of life only to children with disabilities is the mistake I hope that would not be made, as much as the denial that kids with disabilities can have as great high moments as low ones, just like their mainstream peers.

Raising any child gives parents feelings of being overwhelmed and in despair or hopelessness - hopefully balanced regularly by the opposite - so I would hope that you would give that more weight than whether a child has a disability. Parents are already across the threshold of difficulty before the disability is taken into account.

And to us who raise children with special needs, that's a positive observation - and for those who choose to be 'child free' I hope will be helpful in your arguments with friends and family who hope to change your minds.

;-)

Thanks for taking the time to clear up the misunderstanding.

Pam W
SE of Seattle



Pamela Wilson - Children with Special Needs Editor
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Re: Not married - no kids - disability choice [Re: Lisa LowCarb] #412569 04/29/08 02:58 AM
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Originally Posted By: Lisa Low Carb Ed
"So let's say that African Americans are genetically less likely to live long, healthy lives - and have slightly lower IQs."

You're serious with this? You start out any point you could ever make with this given: "Let's say African Americans ... have slightly lower IQs?" Don't worry about deleting my post to save face. It's already been copied. Wanna ban me, too, Lisa?

How about this grand assumption?
Originally Posted By: Lisa Low Carb Ed
"It is easy as a child free person to say - intellectually - 'only children of X quality level should be born.'"

Did you, a mother, really poll the Childfree? Do you think it is really that easy for us to discount a) the children with "x quality level" (whatever you're deeming that to be) and b) the mothers who bore those children? Or is it just easier for you, a mother, to tell yourself and others that wild off-truth to make yourself more comfortable as you pontificate in this forum with the sole purpose to keep its volume going?

Like I said...lock down the post as you keep doing, and ban me as you've banished the others. Whatever you do, please stop your Miss Manners bullcrap from the pulpit, trying to make people think you actually have a point that a true CF person would even attempt to swallow.

Last edited by Angela P; 04/29/08 03:01 AM.

"Men and women think that it is necessary to have children. It is not. It is their animal nature and social custom, rather than reason, which makes them believe that this is a necessity." --Democritus
Re: Not married - no kids - disability choice [Re: Angela P] #412601 04/29/08 04:19 AM
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Angela - as you know, we have only shut down accounts of people who requested it. We would only shut down your account if you requested it too. That makes sense I hope. Are you requesting that action?

I am generally quite fluent, but your post above makes no sense at all. I can't unravel your post's meaning. The post I made previously was with the help of several child free couples who fully agreed with what I said. I'm afraid I'll have to bypass your confusing post for now, and move on with the conversation.

Cherry Red - you bring up an *excellent* point. We live in a world right now which has an abundance (an over-abundance) of children without parents. All of these children are desperately in need of love and attention and a home. I understand that many people want to raise children, to nurture and guide their growth. Why is there not a stronger connection between these *existing* children needing love, and these groups of parents wanting to raise children?

Last edited by Lisa Low Carb Ed; 04/29/08 04:21 AM.

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