Should people with severe intellectual disabilities have the right to have children?
That’s the questions being asked during a Senate Inquiry into involuntary or coerced sterilisation of people with disabilities. The inquiry will look why steralisation is considered by others for people with disabilities and what effect sterilisation has on those people.
The following letter was anonymously submitted to the inquiry by a mother with a 27-year-old intellectually disabled daughter. Four years ago she had her daughter fitted with a Mirena, which is a long-term contraceptive.
This is why:
I have a twenty-seven year old intellectually disabled daughter, who is now living independently in the community.
Something I thought was not possible has happened. My daughter is in a unit out in the community and has developed a life of independence, yet still within a bubble of support. It is through this network of support that she survives in this world – it is a group of people who have put their hands up to say we will accept responsibility for this person in our community.
So my daughter’s bills are paid, she has food and can clean her clothes (although now I acknowledge there are many new shades of white). She has a carer come in to help, mainly to touch base, see if she has problems that might need addressing.
It is a responsibility we have taken on, just on the chance that maybe all the unhappiness she was experiencing was because she needed independence just like normal people her age. Well it has paid off. This 27 yr old woman has developed a life for herself beyond any that I could have dreamed for her. Instead of wandering from room to room staring out the window, she now has a life. She is experiencing what other people experience, and in doing so is thinking more and being challenged towards growth. Part of that growth has included the acquisition of a boyfriend.
Fortunately for all concerned my daughter had a Mirena (contraception) device implanted four years ago due to her inability to manage her periods. So the solution for one problem has in fact been the answer to the problem of falling pregnant.
All these transitions have caused me great anxiety, and yet propelled me towards questioning why – what is it that is behind all this anxiety?
The answers I have come to sit with I will now share with you.
- It has taken me many years to openly accept and acknowledge how difficult it has been for me to reach this point. As I would not make this decision for any other person I have struggled with my right to make it for my disabled child. So with much thought, agonising and honesty it is with powerful conviction that I hereby claim “NO, My disabled daughter should never have a child”
- What has led me to this conclusion? Her own life is not stable enough to support another life. Advocates who say she has the “right” to have a child need to factor in her ability to be RESPONSIBLE for that child.
- The reality is if this person had a child, that child would be dead within a week. Human services would have to be involved.
- Bearing a child, and giving birth to a child, would be traumatic experiences for my daughter. She rings me or other family members every time she bumps her knee or gets a scratch, so I cannot even fathom the mental trauma childbirth would induce for her.
- So traumatic would be this event that I firmly believe no services or supports put in place after the event would help restore her spirit or loss of self.
- A child born to my daughter would have limited life and prospects.
- Care for this child would have to be picked up by others. I have a well-developed sense of responsibility – I guess I always have and always will. So if my daughter did have a child, I would be the person most likely to make sure mother, baby and all are as well as can be.
- But at this point I have choice, and I am stating emphatically, that at my age (fifty-four years), I do not want to rear a child. I have reared three children, loved them and given them as much direction, support and caring as possible. And it was all done when age appropriate.
- I do not dare to tell any one of you on the Senate Inquiry committee how to live your lives, yet the direction of my life is somewhat under the direction of the findings and outcomes determined by others.
- Leaving this vulnerable woman without sterilisation is now what I would consider negligent. The possibility of someone experiencing trauma when unnecessary is negligent, it is a severe denial of compassion, responsibility and duty of care.
- I understand that not all cases are the same, and I hope you understand not all cases are the same.
- Denial or disregard of my voice is what creates a lot of my anxiety. The catch cry of all parents of a child with a disability is “What will happen to my child when I die?” I hear it and think it often.
- Sterilisation of my daughter is one thing that I can ensure for her before I die, otherwise who will? I feel like it is being proactive rather than reactive. Whilst her caring doctor and I could make it as comfortable experience as possible now, why would we wait until tragedy strikes and then in hindsight wish things had been different.
- I finish with the important point that led me to find my voice. I believe that we all assume that we have rights, and fortunately we are born to a country which encourages and supports this belief. Yet humanity decrees that with rights comes responsibility. If we assume rights without responsibility we are simply loose cannons on a path only concerned about self, and not mindful at all of the impact we have on others we share this world with.
Thank you for your time and consideration of this submission. It is important for me that I be heard, not only for my daughter, but for all the other people with disabilities who have no parent to speak on their behalf.
Comments
72 Comments so far
My sister had Downs Syndrome and also was Autistic. The combination of the two syndromes was profound. On the Downs Syndrome scale she was very low functioning. For example, incontinent as an adult, unable to speak or say words – only sounds – and never grew over 4 ft 5″ tall. She was unable to make eye contact – and had the repititous behaviours sympotmatic of severe autism too. She too, was put into the community to live in a community home in order to try and let her live some type of normal life – there was a live in carer and 11 others in the house. Some how she became pregnant – and later miscarried. But the incident was so traumatic for her – and those in the house and for the carer – let alone my parents – that they made the easy decision to have her sterilisied. The horror for us all – was that we had no idea whether she may have been raped …we cannot imagine it would have been consensual. Ultimately, my parents removed her from the communal house – and at an incredible cost to them personally from a financial perspective, the Catholic Church stepped in and enable her to live in a convent cared for by nuns until her death 10 years ago from the flu. (yep, she got the flu and it travelled to her heart and she died of a heart attack). My message here reflects most of the sentiments of the comments below – that is: Amber is right – my parents were right – and I think their decision to spare my sister the confusion and terror that plagued her not only about her menstruation – but also the unforseen pregnancy – then sterilisation was and is a very great comfort. I stress to state that my parents removed my sister from the situation – and the whole debate about abusers is another topic – but on the message of sterilization of severly mentally impaired – is one that should be the responsbility of the carers.
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As much as this is a very sad story, it is also a beautiful story, told by a mother with a beautiful heart about a daughter, who will always remain her beautiful baby. I can’t comment much more than that because I am not, and never have been, in this position except to say that her arguments are well-reasoned. My thoughts are with her, and also her daughter.
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I don’t think the question of whether a child would be adequately provided for can be part of the debate; that’s too subjective and we don’t use that reasoning to decide whether others should be allowed to have children. In other words, those who aren’t disabled don’t have to meet a minimum requirement for income, IQ, etc. If we make that part of the debate, we’re starting to cross some lines into unnerving grey area.
I think it’s actually fairly simple. If an individual is disabled to the point of being assigned as a dependent of someone who is given the responsibility of making decisions about their care, and if the disability is severe enough that this arrangement will be permanent regardless of age, then the question of sterilisation should be handled by the person with responsibility. After all, they have the responsibility for all other decisions. The mother in this letter did the right thing because she recognized that her daughter couldn’t make a mindful decision to become pregnant and would be traumatized by the experience.
Parents shouldn’t get to decide whether or not their kids are “good” enough to eventually have kids, but the guardian of a dependent adult who can’t make his or her own decisions should get to decide whatever they feel is in that dependent’s best interest. That’s the definition of the responsibility they’ve agreed to take. Does that mean all guardians are trustworthy and will make decisions that truly are in the dependent’s best interest? No, but that’s a much broader issue than question of sterilisation.
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I think it is a case of having the option there. I would not like to see routine sterilsation being done in childhood or anything, that would be horrendous. However the parents of young adults with severe profound disabilities that prevent the ability to make decisions for themselves let alone others should be able to have their dependent fully assessed by specialists to determine if sterilisation is in the person’s best interests. Every individual case would need to be properly assessed first though – we have to be realistic and recognise that some parents/guardians would abuse the system if it was left unregulated. The mother in the article however, as well as many others, are having THEIR rights denied by not making it a viable option and that is what needs to change.
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Thank the lord. I have an 8yo son with Autism. I have been worrying about the possibility of him having children for a while now. It terrifies me that he too will have a child with Autism. I don’t want him to go through that for his sake (It’s a very hard road. Rewarding at times def but god it’s so so hard) and also I worry that as a father his empathy and understanding would be limited.
Good luck to the mother who submitted this letter. You are saying what a lot of us are thinking and worrying about.
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but where’s the line? What if I just think my child has the wrong personality to be a parent and would make a bad parent? Does that give me the right to decide he or she will never be one? Some disabilities preclude ability to parent while other just present challenges that can be overcome.
I have a friend with severe Asperger’s. Becoming a father is exactly what helped him to cultivate abilities in empathy and understanding. The change in him was remarkable and beautiful, and he’s a wonderful father. He may not be able to check off everything on someone’s list of what makes a perfect father, but he’s part of a happy family, and that’s what matters. I’m glad no one was able to deny him that experience.
If your son is going to become an independent adult, you’re going to have join the ranks of fretting parents who let go and let him decide for himself what his path through life will be. If his autism is severe to the point of you being his legal guardian for the rest of his life, that’s another story.
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OBVIOUSLY Cil’s son has severe autism. She would not be talking about preventing him from having children if he wasn’t. Parents don’t just think about these things to be cruel.
A lot of people are just not understanding that we are discussing people with profound disabilities that require extensive care for the rest of their lives and will never be able to work. We are not discussing mild disabilities – those parents of young adults with severe intellectual disabilities should at least be able to have the viability of sterilisation assessed by a doctor. I agree it should be not unregulated or done in childhood, but the option should be there.
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It is not about the “wrong personality”…. It IS about wether this person can care for themselves independently not physically, but MENTALLY.
I work in disability and there is a certain level of independence gained and right of passage in those with a disability moving from home into a share care house. But these are people who still require 24hr supervision. First and foremost these parents have a duty of care to their child, which the mother writing the letter seems to have!
No matter if we are talking about an adult, with an adults body….If the mental age is that of a child, then it makes sense that a child can not raise a child……We would all be up in arms if a 7 year old had a baby?!?!?
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Would just like to invite interested parties to google:
1. The International Planned Parenthood Foundation’s document on sexual rights
2. The UN Declaration of Human Rights:
3. The UN Declaration on the Rights of Persons with Disabilities
4. A documentary entitled ‘we won’t drop the baby’
And also invite you to consider education (comprehensive sexual health and relationships education tailored to the needs of people with disabilities) instead of or before intervention. Sterilization of people with disabilities was done en mass in the past and I would like to think we have come to a better place.. The above documents and the work I see in the community around education tells me so.
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Jen, I get these documents and declaration on human rights. Please see the comment below yours from Lauren P whom has an intellectually disabled sister who has limited self-help skills and may be vulnerable. Sex Education or preventative measures like you’ve suggested may not be effective. Prevention such as contraception is a positive measure, I believe. Would you want to see a young woman go through the trauma of birth; struggle to look after and provide for another human being when they need as much support as they can get, themselves. I would love to see awareness in the community that families with disabled members work bloody hard, more than often – giving up their own lives to put family members first. Get a grip Jen and wake up to reality. AND yes, I would say this at a dinner party!
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Having a family member with a disability can be incredibly challenging. I really admire people who continue to raise awareness as I feel that people with disabilities are unrecognised within our community.
My 23 year old sister is intellectually disabled & has the mentality of a 7 year old. She now lives in a shared accommodation facility & has carers looking after her. I think each case is different however my sister has difficulty in basic self care functions like washing her hair or even brushing her teeth so she wouldn’t have the capacity to look after a child, let alone herself. I worry about her as she is very vulnerable as she is very attractive & her friendliness could be misconstrued in some situations.
Thank you Mama Mia for raising awareness of this moral dilemma. It would be great to see an article on the role of carers for the disabled in the community. These amazing people need to be recognized, as does the argument about the lack of funding for intellectually & physically disabled housing within the community.
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What a brave mum. I hope she is heard by the people who most need to listen.
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My sister in law is profoundly disabled. She is given Depo Provera every three months for two reasons – 1: she does not have a well-developed sense of personal hygiene and a period is traumatic and quite awful for her; and 2: our family is concerned that there are evil people in the world who may attack her (rape, assault, etc).
The thing that has always spun me out is that my beautiful mother in law is always completely freaked out by any mention of N’s reproductive rights and tells all of us to keep it very, very quiet that she’s on the medication because there are people (who I like to think mean well) who say that it’s not my MIL’s right to make that decision for her daughter. It’s awful because until you go through what my MIL goes through every day with N, you shouldn’t have the right to make decisions for her (that would be in her best interests).
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To my knowledge Depo Provera does not prevent sexual assault. This is where the arguments of many on this site come unstuck. That women (and many men) with intellectual disability need protection from sexual predators is a sad fact that certainly warrants more education, including protective behaviours training, and broad social changes in how disability is viewed and how people with severe and profound disabilities are supported. Sterilization may seem a pragmatic response but it punishes these women for others’ behaviour which is, after all, criminal.
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I think you misunderstood Susan she never said to prevent. I read it as if she was sexually assaulted she wouldn’t get pregnant which is common sence knowing what depo prOvera is for.
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I was trying to make the point that we need to separate the issues: the rights of women with intellectual disability to reproductive freedom Vs their capacity to raise children. Obviously these are contentious, deeply-felt and complex issues that differ on a case by case basis. The vulnerability of people with intellectual disability to sexual assault should not be used to justify removing their reproductive freedom.
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What a well written thoughtful submission. best of luck.
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I have saved this letter in my ‘I will need this one day’ folder. My intellectually disabled daughter is nearing her teens. And I have already told my husband that I have to manage her bowel and bladder and I am not managing a menstrual cycle also.
As parents, we will do anything for our children. But, the practicalities of living with a family member with a disability are lost on everyone other than those who live it day in, day out.
What a fantastically written piece. Bravo to the author!
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Just ‘because you can’ doesn’t mean you should. a very well written letter from a very practical and realistic standpoint.
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I completely understand this post. I have a brother with intellectual disability who is 43 and still living with my mother. He doesn’t fit into a ‘box’ so life hasn’t been easy for him or my mother. One one hand, no support for my mother, no support for him because his disability hasn’t’ got a ‘title’.
One day when Mum isn’t around he will be my responsibility and the questions of where he will live, if he will be accepted in a new community and how I structure his financial responsibilities are all questions I have been thinking of for a long time. Do I sell Mum’s house and buy him a home closer to me? (he is 5 hours away currently) or do I keep the house and pay his bills on his behalf? My husband and I just bought a property with a little cottage, we plan on keeping that and building and if necessary he and/or mum can live there if anything happens. I have to plan ahead for all situations, even though at 41 and with three children of my own I have lots going on already.
I try not to think of reproduction though, that would make things rather messy for everyone involved. Thankfully, this hasn’t been an issue yet – touch wood.
Anyway, good luck to the writer and her daughter. I hope she is able to do this one big thing for her daughter and have some reassurance, she at least deserves that.
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What a wonderful sister and daughter you are. Ready that cottage brought a tear to my eye!
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I’m certainly not a perfect person Michelle, we all struggle and have our own conflicts. But my entire life I was teased for being my brother’s sister, I watched others befriend him only to make a mockery of him and get him into trouble. My instincts are to protect him at all costs, even though living with my brother isn’t easy. He is a difficult individual, but I can’t blame him for that, none of it is his fault.
My mother lives next to a beast of a man who for the last 3 years has called my brother a ‘retard’ at every opportunity to entice him into an argument. This 60 something y/o man calls the police simply because my brother has a vegie patch with a telly tubby doll on a stake – his claim is that it is a voodoo doll. He attacks my brother at the local shops and then calls the Police to say that HE has been a victim. All because he doesn’t want my brother living in the street. I can’t even begin to tell you how awful it currently is for my mother and brother. So when I saw this perfect little cottage on 5 acres outside Sydney I knew it was the ideal escape in future. My husband and I will eventually rebuild and if my brother or mother ever need care the self contained cottage will be ideal. My grandfather died of Alzheimer’s and I see signs in my mother so lets just say I’m preparing for the worst!
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Congratulations to this brave mother for speaking the truth. She does not want to replicate the heartache she has experienced raising her daughter, let alone a grandchild.
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I wish I knew your name, so I could congratulate you properly on being brave enough to say these words.
You are 100% right, as are the people who have commented below in similar situations.
It’s funny to compare this to the abortion story from yesterday… There’s a lot of similarilies between reaching out for free contraception and this same issue. People need to realise that prevention is better than a cure in so many cases. Don’t bring children into a world where tax payer dollars are just going to be thrown around trying to get them out of dangerous homes, into foster homes/adoption process etc. It’s ridiculous.
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In an ideal world every person would be able to make informed decisions about their own body but that is not the world we live in. As a society we accept that their are times when a person has diminished intellectual capacity, either temporarily or permanently, and somebody will need to make decisions for them. We already have situations in our medical institutions where next of kin have to make medical decisions with far reaching consequences. I would see steralisation of intellectually disabled people who cannot meet the criteria for “informed consent” as an extension of that. I don’t doubt that for many people with intellectual disabilities a pregnancy would introduce even more hardship and trauma to what is already a very tough lot.
The difficult questions for me arise in the “grey areas”. Disability usually exists on a spectrum. The capabilities of people with disabilities and their carers are different in each situation. How do define “severe intellectual disability”? What criteria do you set? How do you judge if their carer has the right to make these decisions?
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Superbly written. Both practical and full of a mother’s love and compassion.
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I’m sorry if this offends anyone as i am sure that this mother was doing what she thought was the best thing. i am not a mother myself but i have worked with disabled children and i believe that they are entitled to make their own choices. OK so fair enough your daughter needs some care there is no denying that but when it comes to kids i believe that it should be a choice between her and her partner. if her partner is willing to look after her and the child i don’t see why it is a problem.
And also isn’t it a mothers prerogative to make sure their child and grandchild are OK regardless of their mental/physical capabilities?
I understand that if it was adoption or donor she would be denied based on those capabilities but if it is a mutual decision between her and her partner i believe that you shouldn’t stand in her way.
obviously it shouldn’t happen until her partner is sure that he is ready for the huge responsibility and if it didn’t work out for them then he could take full custody of the child,
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I am equally sorry but this does offend me as the grandparent of a child with a disability. Why is it that my granddaughter’s family make decisions for her about everything else but not about her ability to have and parent a child? Why is it not my granddaughter’s parents right to protect her from a pregnancy? As ‘anuther mia’ and ‘distracted’ point out below, there is a lot more to this than you seem to understand, despite your work with disabled children. Can you comprehend the effect that a pregnancy would have on a person who cannot speak, who must keep strictly to the same routine every day, who, in the case of autism, has no understanding and no desire to understand another persons needs or wants?
It would be nice if the needs of people with disabilities and their families were really understood, not just dismissed with the “everyone is allowed to” mantra.
No one should be forcibly sterilized but I think that contraception ought to be easily obtained for these young women by their mothers the same mothers who make other decisions about their lives, because these young women are not capable of making those decisions. I am not willing to sit quietly while there is a possibility that women like ‘anuther mia’ have grandchildren foisted on them. Also note the statistics from ‘distracted’ which show that this grandchild may be the result of sexual abuse. How is this mother whose prerogative it is to look after this child and grandchild even supposed to work all this out.
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Sezza you obviously don’t have children. Having children requires an enormous amount of energy and selflessness. When someone is mentally disabled, they are simply unable to provide for the child in the way they should. There are a lot of people around who aren’t mentally disabled that have children that shouldn’t either but that is another story.
Yes the disabled person has rights but so does the child.
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Working with a disabled person and hmhaving a disabled child you have to care for well into his/her adult years are two completely different things. The parents of a disabled child’s dreams get put on hold, retirement and financial needs are so much harder, they wonder who would look after their disabled child if something was to happen to them, It’s not an easy life. You get to go home after work and on weekends they don’t. You get to go on holidays most of those parents don’t.
Most of the time the partner is disabled too or the pregnancy is a result of sexual assault. To say only the disabled person and partner can decide makes no sence when they are being looked after by someone else who would have no choice but to look after the child as well. That’s not fair or right for them so their choices count too.
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All I am hearing in this is partner, partner, partner. This young lady is severely intellectually impaired. Has it not occurred to you that her partner might be intellectually impaired as well? This mother has made it clear that her daughter does not have the capacity to care for a baby and that it would be traumatic. She is not likely to have a partner of normal intellect who would be able to look after her and a baby, which would mean her mother would be looking after it. I really can’t see how it is so difficult to understand.
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My friend’s sister has Asbergers. She was 19 when she gave birth to her now 10 year old. The family doesn’t know who the father is and assume that she was raped.
The grandparents have custody and when they’re too old custody will go to my friend.
Basically, my friend’s sister doesn’t have the ability to care for her daughter and she’s fortunate that she has family willing to help out. I’d hate to think about what would happen if she didn’t have the family support.
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If she couldn’t manage her periods how would she manage a baby or being pregnant and giving birth?
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If this young woman isn’t able to deal with her own menstruation or a scratch how on earth would she deal with childbirth or caring for an infant? Her mother is doing the right thing.The young woman still has the right to enjoy a healthy relationship with her partner without the worry of pregnancy.
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Don’t you think that kind of decision making would depend on the level of disability? I would think a profoundly intellectually disabled person would have major difficulties raising a child and working with and parenting would be very different.
This mother sounds caring and compassionate.
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Youre assuming that the partner will not have any disabilities of his own. Sometimes that happens, but just as often the partner has his own to deal with and may be no better able to cope with a baby.
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And if the partner also has an intellectual disability is your opinion still the same?
If she can not care appropriately for herself then how is she expected to care for a baby?
How can the parent/s teach the child valuable life skills if they themselves are lacking them and rely on the help of others to function at an adequate independent level?
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Agree agree agree imphatically i agree
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I’m disabled and have CHOSEN not to have children. It’s not fair on the child that I could not be 100% present in their life.
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I wholeheartedly agree with everything this mother has said. I am in a very similar situation – I have a profoundly disabled 21 year old daughter. If I did not coax her from her room to eat she would never come out and would starve – literally – what chance does a baby stand to have? I won’t even get into the fact that she was born without eyes so hence would have to overcome total blindness to perform the task.
What I don’t understand is how people can shout from the roof tops that we are denying a basic human right – what about my rights?! I am exhausted from caring for my daughter – why should I have to care for any children she may have? Respite is nonexistent – we were granted 11.5 hours per week. I had to give up my career to care for her as there are limited support accommodation options. I could go on and on.
When is someone going to stand up for me and my rights?
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Right … and when you consider that a female with intellectual disability has a 90% lifetime chance of being sexually abused, the possibility of a blind and profoundly disabled girl becoming pregnant is not as remote as many might think
It must be hard and I really wish there were far better supports for people in your situation xox
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Thank you so much for the kind words, distracted, it means more than you could possibly know. xx
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You are an amazing woman “Anuther Mia”. I hope you know this. Perhaps some people should walk a mile (let alone 21 years) in your shoes before getting up on their high horses and ranting on about rights when clearly the rights of people in your situation don’t count. All the best.
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Where’s that like button??
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Policies are too often formulated by intellectuals in ivory towers. My 11 year old daughter has severe physical, intellectual & vision impairment. She wears nappies 24/7 and is totally dependent on us and a team of paid carers. Due to the spasticity in her body and her ever increasing size, even changing her nappy has become a difficult task. She is our gorgeous girl and we love her to bits. However, the reality is that she won’t ever have a concept of what periods are or why she is experiencing awful pains in her tummy each month. Surely, with a hyserectomy available now as keyhole surgery with 1 day in hospital, would her right to dignity and a comfortable life (not to mention ours) not be better served by her undergoing this simple procedure?? Of course, appropriate safeguards have to be in place to ensure sound judgment in these matters. However, putting some sort of blanket ban on sterilisation and hysterectomy of women with intellectual disability is nanny state on steroids!! The law as it exists at present requires us to engage lawyers for us & a separate team to represent our daughter. We then have to apply to the Guardianship Board which would most likely reject our application (based on it’s recent decisions). We may have a better chance through the Family Court of NSW but will have to do this before she turns 14. I would like some of these people who have brought this matter to a senate committee to come and care for our daughter for a few weeks….. maybe a dose of our reality would help them see sense.
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As a teacher who works in a school with special classes I am constantly amazed at how ignored, misunderstood, under represented and just plain ignored parents of children with disabilities are. You work so hard and do not need to spend more of your life looking after a grandchild just because some people believe your child deserves to have a child if they want, despite the inability to care for them. Parents of disabled children have rights, they have done enough.
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This is one fantastic mother. I am sure it would not have been an easy decision, but is it one that obviously needed to be made.
Personally I believe that parents should be able to take this step, the “do gooders” have no right to interfere. I have an intellectually disabled cousin and there is no way he could look after a child.
Becoming a parent is privilege NOT a right.
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As someone who has recently spent a lot of time speaking with parents of intellectually disabled children, one of the main things that has struck me is how dismissive of parents views everyone else can be.
Doctors don’t believe you when you say your child’s sick, child carers don’t believe you when you say that your child won’t react well to something, judges don’t believe you when you say that your child cannot have a child.
They need to use a lot less ego in dealing with parents, and much more listening skills.
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This story is very close to home, every word. I feel lots of compassion and empathy for this mother and I am sure she has made the right choice, as hard as it may have been. The disabled woman in my family is a kind, loving person, who dotes on her godchildren and would probably love to be a mother in theory.
But the sad truth is, she has absolutely no comprehension of logic and consequence and has terrible panic attacks and distress over minor situations. She has been incapable of looking after a pet, a child would surely end up being taken away from her.
I think people with physical disabilities can make terrific parents and should have the opportunity to do so, but for people with severe intellectual disabilities, I do support sterilisation. Where is the line, though?
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At the heart of the debate around the sterilisation of women with intellectual disability is the belief that they are incapable of be(com)ing ‘good enough’ parents. Research shows that most mothers with intellectual disability have mild or borderline intellectual disability and it is important not to conflate this group with those who have more profound disability. In fact, we’ve known for decades that mothers with intellectual disability can learn to become ‘good enough’ parents if they are given the right support at the right time. Isn’t this true of every parent?
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Is it fair to a child born of a “good enough” parent?
Is is the right of any of us to give that type of life to a child?
Would you want to be raised by a “good enough” parent?
I sure wouldn’t
n’t.
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Those children would probably get something absolutely unique out of the relationship, something that is just not accessible with an intellectually normal parent.
And if they’re ‘good enough’, then it’s absolutely none of our bloody business whether they have kids or not.
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It is our business when we’re the ones expected to help & support & be there to take over when/if they can’t. Would you be against termination of a pregnancy if there were abnormalities in the first instance? What if your child’s baby was severely disabled? What if their partner was also disabled or Down syndrome & therefore the little family they’ve created requires even more assistance? Sorry but there’s a lot more to it than ‘none of our bloody business!’
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I don’t know any parents who would claim to be more than a ‘good enough’ parent. We all have to learn how to be a parent and fall short of our own standards. The point is most of us are not pre-judged as failures before we start.
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Neither would I, but I think it is unfair to take children off (or sterilise) “good enough” ID parents when we don’t to the same for non-ID “good enough” parents. We don’t take children off parents who drive drunk with children in the car, or who send their kids to school every day with no lunch, shoes or jumpers, or who leave their young kids home alone. So until we address these issues in all of society, we can’t enforce them against only one section.
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I sought help from a child social worker/psychologist when things weren’t going as I had hoped. One of the things that has stuck in mind since that time is that what children need is a parent to be ‘good enough’. Our society, wrongly or rightly, thinks that we need to be perfect. She said to me ‘imgaine if you were the perfect parent and met every one of your child’s needs . Your child would not be able to function in the real world as they would never have had to deal with real life. Another thing that has stuck with me is she said kids need parents to get it ‘right’ one third of the time, ‘almost right’ one third of the time and ‘not right’ a third of the time. This is how they learn real life skills.
I am proud to be a good enough parent.
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Yes, we definitely need to distinguish between women with mild or borderline intellectual disabilities and those with severe ones. But no, it is not true of every parent that they can learn to become a ‘good enough’ parent, maybe most but not all. The mum who wrote this letter is telling us that her daughter is NOT capable of becoming a ‘good enough’ parent and others have expressed a similar view about their kids. How long do we expect parents of disabled children to give up their life?
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In answer to your question: no.
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I work in a special school and I can tell you that your view is misguided. Even mild disabilities can be passed down, the upbringing of these children of parents with and ID can cause many developmental delays in the children. We have so many children in our school that come from homes with generations of intellectual disabilities and in my oppinion will continue this. Special schools are not made up of just students who were born with disabilities now but filled with children from bad homes and from families that can not care for their children appropriately or just do a “good enough” job. The system can barely take care of the children in their care now and it’s great when they have an advocate like this parent but a vast majority don’t. I belive that if an oppinion is going to be offered on this subject or listened to it should be that of this mother as it is based in experience and fact.
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I completely agree with this article, I have a mentally disabled uncle, and although he is 51, he has the mental capacity of a 9 year old. He can barely look after himself, he can’t read or write, he has carers come in to shower, cook, clean, shop and take him to appointments. If you aren’t able to look after yourself, how are you meant to take care of a child? It’s sad that he will never be married or have a family, but unfortunately it’s a reality that a lot of people are faced with.
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On one hand, those involved in the above situation are lucky that the degree of disability has allowed them access to a contraceptive device. The daughter of family friends has an intellectual disability but not to the degree that her parents could make those choices. Her condition also makes her hyper sexual. She now has four children to four fathers, each with varying mental and physical disabilities. Her parents have successfully removed one child to their care but the authorities won’t remove the others, despite neglect, abuse from the latest boyfriend and zero prospects for their future.
Harrowing to watch as an outsider but unbearably frustrating and traumatic for her parents, who begged authorities for years to allow their daughter sterilization.
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It’s such a hard question to consider, but good the hell on you, I think you’ve gone about it amazingly.
I agree with you and what you’ve done. I read an article the other month from Stella Young what was about young girls with disabilities getting hysterectomies so they ‘never have to worry about it’. I believe this is wrong – the child should be at a certain age where it’s clear what her thoughts, feelings and abilities on the subject are before messages are taken.
This you’ve done, so, again, good on you and good luck
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Tallulah, the intellectually disabled aren’t able to make these decisions in an informed way. Physical disability is completely different to intellectual and I don’t think anyone would suggest that physically disabled people aren’t completely capable of making their own decisions regards this.
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Sometimes the right choice is the hardest – thanks for this submission.
I think that if you can not look after yourself how can you look after someone else. I know that some people can make their lives better for a baby but people with a intellectual disability do not have that option as their disability is forever.
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Gosh what an amazing and caring mother, I hope she can find a permanent solution for her daughter.
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Close family friend has a sister in her late 50′s with Down’s Syndrome – completely non-verbal and lived in an institution her whole life (forcibly removed from the parents at 6 weeks). She had been sexually abused and it was never discovered by whom. Her parents chose 40 years ago to have her ‘sterilised’ and had visits from people who argued that they were denying their child her rights. Their response was that if their daughter had a baby, would they be prepared to take responsibility & raise the child?
Whilst it may seem cruel, the reality of a monthly period, let alone a baby, for an intellectually disabled person unable to care for themselves would be a disaster.
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The lives of people with ID today may be quite different to those born many years ago. These days people with ID are allowed to receive an education, have a life of their choosing and yes…..even relationships. Stop judging people with ID with comparisons from the past. I know many ‘typical’ people who maybe should never had have kids.
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Yeah, it’s a touchy subject. Not all intellectually impaired people will be unfit parents and likewise not all supposedly “normal” people are fit parents.
For me this seems like the start of controlled reproduction and the government being allowed to decide or control who is allowed to be a parent.
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It’s not the government, it’s the parents who have given up so much of their lives already, who are saying that their daughters are not able to deal with pregnancy, child birth and child rearing.
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I totally agree with this mother. As the parent of a child with a sever disability I don’t want my daughter to ever have the ability to have a child. She is unable to care for herself at all and I dread the day her periods start as she will not be able to comprehend what is happening at all! While I have and always will be a supporter of a woman’s right to choose I think in my daughters case I am the one who should choose. Her condition is genetic there is only a 1 in 4 chance her condition wouldn’t be passed on to a child and trust me she wouldn’t cope with a child like her it would fall to me to do this! I love my daughter and always will. I want to be able to make a choice that could save her and my lives
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This brings tears to my eyes as I know it is something I will need to face in the future with my beautiful daughter! It will be a moral issue for some BUT they need to look at the future of all involved and think what will be best for all.
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What a brave woman. I applaud her for the care she is taking for her daughter.
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