The first time I understood that 'they' understood was when someone with an intellectual disability spoke to me about the painful moment when he heard his mother say: "If I had known, I would have had an abortion." She said it in front of him. She said it thinking that he wouldn't understand what she meant. He did. And, maybe ironically, he died a little bit that day.
Society seems to operate on the fact that any can speak as they will regarding people with intellectual disabilities because they don't or won't understand. Hateful words thrown at people with intellectual disabilities don't matter because they, the poor happy darlings, are oblivious to the meaning and the intent. Others, maybe most others. do realize that the words hurt but have no fear because people with disabilities have no political power and their vilification isn't taken seriously. So ... those with privilege and those with power do what people do when they can - abuse their power by abusing others.
I remember seeing a man with Down Syndrome coming out of a movie theatre and being stoned to silence, being frozen in spot, by other kids tumbling out of another movie flinging THAT word around. They saw him. Of course they did. The hurt was obvious. They didn't stop. They didn't care. They were with each other, he was alone. They thought, as they were a cut above, they could cut him down. They thought his disability, his lack of understanding, didn't hold them accountable. He did. They were. They committed the five minute murder.
You know the 'Five Minute Murder?' Its when someone does something to someone else that leaves that person wishing for death for five minutes. For five minutes there is struggle for breath. For five minutes the mind tries to stop the soul from bleeding. For five minutes the will to live, the will to move and the will to go on slowly revives. Those kids committed a crime knowingly and didn't care, cause they probably thought he didn't understand of if he did 'what could he do?'
Today, World Down Syndrome Day, for me is a day of protest, not awareness. To me this is a day where we declare our allegiance. To me this is a day where we pick sides. To me this is a day where we stand, are counted and thus held accountable. It is a day where we pledge to use our voices, use our anger, use our love and use our time - to eradicate the silence that ignorance and prejudice depend upon. We pledge to teach those with Down Syndrome and be taught by those with Down Syndrome. We work towards self advocacy and towards the 'growing' of the chorus of voices of the people affected most - those with Down Syndrome. Our vision is a movement that we support, not lead. Our vision is a voice that we facilitate, not manipulate. Our vision is power placed into the hands of those who need it. Those who are murdered, five minutes at a time, throughout a lifetime.
Those who live should not wish death. Those who live should not suffer willful hurt. Those who live should not have to depend on the voice and the courage of another. That, to me, is what World Down Syndrome Day is about.
People with Down Syndrome understand - it's time others do too.
63 comments:
. . .
I think dr Pushpakaran has a very different idea of awareness than us. . . .
The doctor's post may be coming from a different angle - but is valid. I'm sure there isn't a parent in the world that wishes they had a baby with difficulties. Thankfully there are many who embrace differences with love. But, if there is a possibility to conceive and have a better chance of having a child who will not have to experience the 5 minute murder over and over in their lives - should we not consider that possibility? (I am NOT speaking of abortion - just some healthy choices.) Being a good parent starts with making good decisions even before pregnancy. So let's keep an open mind - and be aware of things we can do - before and after. And the awareness that folks like Dave bring to those already having difficulties goes a long ways in fighting the ignorance. Thank you Dave.
Being a victim of other peoples violence - the five minute murder - points a finger at the purpetrator of violence, it names the violence for what it is. It doesn't suggest that we stop the murder of one by the elimination of many. Fat kids, kids with glasses, clumbsy kids, kids of colour, kids who are tall, kids who are short - the body count is going to be huge here. So Anon, parents of kids with pimples and kids who get good grades, their kids and all the others will experience social violence. Perhaps parents should begin to parent their kids in such a way that when the shot is fired, it will always miss. There is a way to do this - perhaps the solution is there.
The other day, at the mall, a middle aged woman with Down Syndrome was out for lunch with her sister. When she got up to throw away her garbage a man spoke to her. He asked her how old she was and then told her he had a one year old daughter with Down Syndrome. He proudly showed her a picture of his little girl. The woman and her sister admired the picture. Everyone walked away feeling good. When the sister shared this story with me I had a feeling that everyone in the story had somehow been affirmed.
I don't think the answer to people being cruel is to eliminate those they cruel to. Think of all the types of people who would no longer be here if that were the case.
I know Dave has a policy of not deleting comments as he valueas them all. Others have no concerns about deleting and devaluing whole groups of people. I was disheartened by the first comments and wondered why they invade this day rather than start their own "eliminate Down Syndrome" day.
I have no idea what Dr. Prem Raj Pushpakaran's point is. What "proper counseling"? Unhealthy choices don't cause Down syndrome, Anonymous. It's not Fetal Alchohol Syndrome. Quit trying to put the blame on the mother. And if his "older mothers" comment means to quit having babies after you're 35 - well, guess what? 75% of babies with DS are born to mothers under the age of 35. Having "Dr." in front of your name doesn't mean you know everything.
Instead of trying to do away with it, how about recognizing that people with Down syndrome are indeed human beings just like you? They deserve to live on this planet and breathe the air just as much as you do.
And they deserve to live that life without experiencing the Five Minute Murder over and over.
Eliminating them to fix that situation is like eliminating women to do away with rape.
Just ridiculous.
Tamara nailed it!
Dear Dave:
Yes Tamara nailed it.
Having Down Syndrome (or any other disability for that matter) does not make one's life "unworthy of life"(as the Nazis put it). What makes life hard for people with Down Syndrome is the supposedly "worthy" people who bully them and commit the 5 minute murders - perhaps we should be focusing efforts on censuring that kind of behaviour instead of eliminating people with Down Syndrome. Those 5 minute murders don't just come out of thin air - they come in a society that tolerates and even nurtures hate.
My brother lived with Down Syndrome. The Syndrome really caused him very little trouble - he was fully capable of loving, being loved, and enjoying life to the fullest. What made his life hell was other people and how they treated him.
Colleen
Great series of Ds posts here, Dave! My favorite is probably the "question authority" one - after all, if I hadn't questioned authority telling me my Moxie would be "a burden for life" and that I would be wise to terminate her, well, I wouldn't have had her, would I.
Lots of things to think about. Thanks Dave for starting the discussion (thinking....)
I wish I could figure out when we stopped accepting people for being people and not for whatever perceived 'problems' we see in them. Instead of being people, family, friends, lovers, even enemies, we are the fat one, the blond one, the disabled one, the insane one, the latino one, the gay one, or maybe the token so-called 'normal' one.
Maybe we've never accepted people for being people. We have plenty of language to use to discriminate against those we perceive as different when the simpler words like friend will do.
Amen.
Tamara, I wonder if "proper counselling" means counselling towards abortion? Read the first comment with that assumption, and it kind of makes sense.
Sometimes I am lost for words to describe my feelings...
After reading your post I silently voiced what Liz already said "Amen".
Julia
Shan - It certainly could be what he meant, but why would he single out "older mothers" when new non-invasive tests are supposedly being offered to all pregnant women without regards to their age?
And not sure why we would want to save a person from "five minute murders" by not allowing them to live at all ... Not sure I understand the logic ...
silence = death.....awareness is one thing and Dave, yes....this is a protest day...ummm People with Down Syndrome are people with dreams, desires, thoughts, opinions, political ideas, sex fantasies and so on and so on.....
So, I doth protest Dr. Prem and Dr. Prem needs to learn that it is not Downs Syndrome if indeed he/she is going to be doing proper counseling...
oh...yeah....what the **** is proper counseling?????
It may sound horribly trite to say 'some of my best friends have Down's Syndrome', but it happens to be true. And not only their families and friends, but our societies and indeed the world would be much worse off without them.
I'm happy to pledge to be taught and to teach, to take sides and protest.
Never in a million years have I wished I hadn't read the comments here. So sad on this day that those would be the first comments. I completely respect your respect of all comments. Just not what I expected to see. They need to go read your two previous posts.
Anonymous must life quite the life to be able to assume that a baby with typical chromosomes is a baby without difficulties. One might assume from that post that they have NO children. If me being old is what got me my girl- thank god I waited.
Cole - I totally agree. I never get upset with comments here but am utterly disgusted by this doctor. He obviously does not understand statistics let alone anything about Down syndrome. It is a shame that he has MD after his name and people take him seriously because of it. In my mind, he is a disgusting human being who uses his degree for power and control which he never should.
First and foremost, thank you for this series. All amazing. Hated to come to this last and find that still ignorance abounds. Although, I know it does, just saddens me but never weakens my resolve to soldier on. Perhaps we will continue to face it for always but no matter. We will keep, keeping on. Spreading the word about unconditional love to ALL human being, irregardless of what others perceive of differences. This entire world is made up of 'different' and thank goodness. What a boring place it would be other wise and what magic we all would have missed out on.
I am an 'advanced maternal age' mother and I where that title proudly but not as proud as I am of the child that came to us to show us the way. She came bearing an extra chromosome and a rare blood disorder and suffered a stroke inutero and had a rare form of epilepsy AND went through 8 months of treatment for leukemia .... does that stand as a testament of why these beautiful children should NOT be given life? Some may so narrow mindedly think so. I however see her as a beacon of hope. A testament of all that is good. Courage and resiliency show in the tiniest of bodies. Enduring the unfair and still emerging victorious. Inferior?? I think not. SUPERIOR. And I am blessed and lucky to be her mother. If anyone cares, click over and see a face that represents Down syndrome and I defy anyone to think she is anything but perfect.
Sorry for hijacking the comment section Dave. Thank you again for all you do, bringing awareness and light to a, at times, dark world.
I didn't know the stat quoted above, about 75% of children with DS born to women under 35. I thought the incidence increased with the mothers' age.
Even then, I don't understand the 'get an abortion' logic either, Tamara.
But then, I'm pro-life.
When I was pregnant at 28 & 30, and was offered the screening, I refused it. It sounded like a search and destroy mission, to me.
Shan - You are correct that the odds of having a baby with DS increases with maternal age. However the majority of babies with DS are born to women under age 35 because that age group gives birth to so many more babies than the over 35 group.
Reading over these comments for the the first time I am struck at how defensive and attacking many of the comments are, especially from people that are suppose to be supporting acceptance of those that are different - or does holding a different point of view not count?
Really? So because most folks that have, are related to or have friends that have DS enjoy the company of DS folks it is ok to purposely create people with DS. Who suffers the most?
Because doctors can put most victims back together today after a car accident does that make it ok to drive drunk? You would probably say no - but yet defend the right to make a life miserable.
I think it is all very noble to say that having a child late is your choice, and you are ready and able to take what is given - but you aren't the one that has to live with the disability first hand.
Just because we can do something doesn't make it right. If there is a possibility of not having a DS child - wouldn't that be better? (I don't think the doctor is promoting abortion.)
If we want to make a difference in the DS world - use your head more than your heart. Do the research.
Oh - I have a disability. Like Dave I have my days of anger and frustration. I see more days of "red" and "blue" than most. I'm not saying I wouldn't want to live - but if I had a choice not to have a disability - you can bet I would take it.
No-one is 'purposely creating people with DS' - except perhaps God, depending on your point of view. They exist, in every nationality. As a group of people with a particular genome, to eliminate them would be genocide.
As for the whole question of life being more difficult and maybe not worth living for the individual concerned (in the end the opinion of family and friends doesn't matter so much, I agree) - those people with DS who I've asked have said that their lives are very much worth living.
Some years ago, there was a scandal in the UK around amniocentesis and a journalist from a Christian newspaper came to my community to interview some people with DS about exactly this ("Is your life worth living?'). Philip replied 'You're from a Christian newspaper. I'd rather talk about the divisions between the Christian churches. I think it's more interesting'. Philip's life was a gift, to himself, and to those around him.
Nazi's held a different point of view, and they killed people deemed unworthy of life.
Peter Singer holds a different opinion and he advocates for killing children with disabilities, after birth, so society doesn't have the burden of their lives.
Sometimes opinions are more than opinions - they are ideas that need to be fought. Why do people who are aggressive always call those who fight back 'defensive'. You attack, we defend. What you are really annoyed about is the fact that we don't just accept your annonymous expertise and your annonymous finger pointing.
People who suggest we don't welcome all opinions are never welcoming ours. People who want us to respect their point of view, never bother to look at ours.
Don't think, anonymous commenters, that your point of view is fresh. It's not. Bigotry is a point of view, with a long, long history.
Thank you Dave for another wonderful positive post.
Ummm, Dr. Prem, I feel sorry that you wasted so many years in school, have that big fat title in front of your name and still don't have a clue. Ignorance is the biggest disability!
Janet - if you follow the rules of the internet as soon as you mention the Nazi's or Hitler you've automatically lost the debate. You can't just wind everything down to 'but what about the Nazi's...'
People ARE entitled to their opinion. The implication that if I don't agree with you I'm somehow an extremist is incredibly insulting. You should be ashamed of yourself.
"Because doctors can put most victims back together today after a car accident does that make it ok to drive drunk? You would probably say no - but yet defend the right to make a life miserable."
Selective abortion does not prevent *disabilities*, it prevents the whole person. When you abort a child with DS, you're not choosing between having a child with DS vs an NT child, you're choosing between a DS child and no child (sure they can have one later, but that's no more the same child than I am my younger brother).
Disabled people have every right to cite Hitler and the Nazi party. We were the first sought out to be killed. Attitudes do lead to practice. You call me by name, and attempt to shame me, yet you hide behind Anonymous. I am not ashamed of my views, nor am I ashamed for 'appropriately' citing history. I wonder why you want to 'shame' me, and yet hide your shameful ideology behind a mask. Name yourself before shaming someone else.
Not sure if the Anonymous posts at 1:42 am and 1:53 am are from the same anonymous, but I'll address both.
There is a difference between respecting someone else's point of view and remaining silent while someone spreads misinformation.
There are two ways to prevent a baby with DS being born - not conceive one in the first place and abort.
If the Dr from India is suggesting that women over 35 do not have children, then he only prevents the birth of 25% of babies born with Down syndrome - and prevents the birth of a lot of babies born without Down syndrome.
What is he suggesting? I have no idea. The condition of Down syndrome is understood as the trisomy of the 21st chromosome. But no one has found the reason that chromsomes trisomy. Even if an egg has an extra chromosome, there is no way to identify it before it drops and is fertilized. And then there are the eggs that split after fertilization causing the Mosaic version of Down syndrome. What caused that? How do we stop that from happening. It probably happens hours or days after conception. Medical science is not there yet. Maybe they will be someday - I have no idea. I'm sure it will happen long after I'm dead.
And, there has been research done on the feelings of people with Down syndrome and how they feel about having Down syndrome. When my son was young, I didn't understand parents who said that if there was a "cure" for Down syndrome, they would not want it for their child. I just didn't get it. Sure, I would go for a cure. Then I came to the realization that it just wouldn't be my decision. My son is almost 15, and he would have to make that choice. (And I realize this is totally a hypothetical situation that probably won't ever happen).
So, interestingly, I saw some study not long ago that many people with Down syndrome wouldn't want to change themselves. I think that speaks to their acceptance of themselves in a very powerful way. We should listen to them. I know not all people with DS feel that way, but many do.
To summarize: There are no "healthy choices" or "good decisions" that can be made before pregnancy that will prevent Down syndrome. Not all people would abort a child with Down syndrome and should not be forced to do so. Many (most) people with Down syndrome report that they are happy with themselves just the way they are.
May I add, that I have done my research. I am not speaking with my heart. The doctor and at least two of the Anonymous posters have not done their research and are spreading information that is vague and probably false.
I think Dr. Pushpakaran is the one that needs some counseling...
Love you, Dave. Great post.
Actually, just today, my husband and I were marveling (as we do SO often!!) at how our daughter, Samantha, (who is 5 and has Down syndrome), makes such a positive impact, on complete strangers, on a daily basis. How could this world function without such beautiful, pure spirits? Without the unconditional love and joy? Without people who naturally *lack* malice, pretense or narcissism?
As a disabled person and someone raised in the Jewish faith who had many family members killed by the Nazis (although some few survived), I find any and all reference to Nazis as "being like" anything else completely abhorrent.
What happened in Nazi Germany is a stain on all of humanity. To compares anything else to it is to water down the impact of what happened to millions and millions of people.
If you cannot make your case without bringing up Nazis and Hitler, you are not making your case at all.
Aborting a fetus because of Down Syndrome is horrific not because of anything else. It is exactly what it is -- the idea that an abortion should be performed solely because of a disability.
Did you know that at least one in ten women would abort a fetus if they knew it would become a fat person? Think of the shallowness of that.
I respectfully disagree, in part, with what you are saying. I abhor people using terms like "soup nazi" and speak up in protest about the minimization that occurs by the casual usage of that kind of terminology. But, in historical context, I believe it is important to mention. I, too, am Jewish, and I can tell you that in my family, and among our friends, we discuss disturbing trends, always with an eye to the past. Why can't people with disabilities, my other family, do the same thing? The connection between Nazi ideology and eugenics is not well known. Do you know the story about the first disabled person killed under Hitler's regime, do you know what he learned from the marketing of that death? I do. Not only that I can reference my sources. I do not casually, as you suggest, mention this history. Hitler believed in a world without disability. Nazi doctors castrated and sterilized people with disabilities to eliminate the gene pool of those who's lives weren't worth the living. The elimination of people with Down Syndrome has a long history and to ignore the part that Nazi science has in that history is dangerous. It may upset people and people who set "internet rules" may not like it. This is part of the history of disability and speaking about it on a disability blog is not only appropriate, it is imperative.
Thank You Dave for this important post, very well written and so right as usual.
I live in Switzerland (and am also French, and spend some time there too)
Here, where english-speaking people would use the R Word, people use slurs that directly reference people with Down Syndrome, I just can't imagine how painful for people with Down Syndrome (my colleagues haven't talked to me on this subject, and I didn't ask them, because I think it may be a painful subject and don't want to trigger them.)
But thamk you for this post really.
Dave, don't know if you've ever seen the US website "Stuff White People Like," but they have an entry about "awareness." As in, white people love to raise awareness, because they naively think that if people are aware of bigotry, they will choose not to commit it. You, like the writers of that site, know better - that this is, alas, not necessarily the outcome.
anon said: "if you follow the rules of the internet as soon as you mention the Nazi's or Hitler you've automatically lost the debate"
I have this to say: first read the Godwin's law FAQ. (Though I am, of course, the sort who thinks "rules of the internet" are a bullshit notion in and of themselves. Godwin's law in and of itself, however, is not a rule to guide behavior or argumentation.)
As well: As Godwin's Law of Nazi Analogies becomes more famous the probability of misinterpretation and misapplication of the law approaches 1. All it says is the probability of an analogy approaches 1. It does not say such comparisons are automatically fallacious.
Also note that anon says nothing about the Singer reference. It seems that just us soon as they see Nazi analogies they shut down to any other arguments. Flawed reasoning in one part of a given writing doesn't automatically invalidate good reasoning in another part, providing that the latter does not depend on the former. It's a fallacy of relevance. As an example: while Singer's flawed reasoning with regards to disability and quality of life gives reason to look more critically at the argumentation in all his work, it doesn't necessarily mean Animal Liberation is automatically to be disregarded.
somebody else put it much better than I could: "[the idea that whoever makes the first Nazi comparison loses the argument] is fucking ridiculous and ahistorical. I mean, I get that comparisons to Nazism and the holocaust are often used in really inaccurate, appropriative, sneaky ways. but I've been accused of breaking Godwin's law for bringing up actual links to currently active neo-Nazi groups. Nazism had a historical context, its impact is ongoing, and there are many people today who hold explicitly Nazi beliefs. There is nothing to be gained by exempting it from any kind of analysis or comparison to other events. It doesn't help us to crystallise it as an example of the most incommensurable evil, qualitatively beyond any other genocide or atrocity. it's not, ok? that's the kind of thinking that stops us from understanding it and preventing future atrocities. it's also the kind of thinking that allows the unscrupulous to use it as an unanswerable slur. we need more critical analysis of the ongoing impact of Nazism and the Holocaust, not less."
Going from all of this, careful mentioning of Nazi ideology and its origins in American/British-created eugenicist and social Darwinist ideologies, and how much of the base ideas in this ideology with regards to disabilities are still in place, is not Godwin's law. Personally I'd be more prone to reference the earlier American & British eugenicists, because they're more obscure (and I believe it would be better if people were more informed on the subject, and that the Nazis essentially just implemented ideas created in other countries) and...well, nobody's going to pull out this obnoxious crap on me if I do that instead. But it doesn't make such comparisons invalid. At worst, I would be willing to accept comparisons in this thread as blunt.
Someone up-thread said something about how sometimes, resisting certain opinions is a good thing. I unequivocally agree with that statement.
Finished now, and apologies for the word vomit. Dave, thank you for the post.
Folks,
I've followed these comments really closely and have gone through so many differing emotions while reading them. What impresses me though is that, when people disagree, they do so using words to debate not words to demean. I've seen these kind of discussions go so nasty so quickly elsewhere. The respectful, though heated, disagreement is something I'm thankful for.
AS for the Hitler reference, I was glad to see Eric's point and I think he said what he said better than I could say it right now. I remember when the play, 'Bent,' openned in Toronto and mainstream critics howled that the gay community was diluting the experience of millions by claiming to have something to say about the Holocaust. What I noticed was that none of those who made these statements were Jewish. I wonder if there are those who want to 'corral' those ideologies to history as a way of making them irrelevant. Like Janet, and I have written about it before, I don't like the word 'Nazi' used in a humourous way, but mentioning the Holocaust or Hitler in an appropriate context shouldn't be forbidden. I also don't think that Janet, and she may want to correct me here, was calling anyone else here a 'Nazi'. I thought she was simply making the point that opinions and ideas can become action and I thought that point was well made.
Anyways I'm in danger of writing another whole post here, so let me end again by thanking you all for discussing more than yelling.
Dear Dave:
I believe I made the first reference to Nazis in this stream of responses and I stand by what I said. If anyone thinks that what happened in Nazi Germany happened in isolation or just all of a sudden during the war - think again. Eugenics programs and policies were around the world for decades before people were exterminated in Nazi Germany. Eugenics started in Great Britain and was supported by many high profile people in North America and around the world. In Canada we continued to sterilize people without their consent for 25 years after forced sterilization was declared a crime against humanity at Nuremburg - and nobody batted an eyelash.
I too dislike frivolous references to Nazis and Hitler. My reference is not frivolous. It is serious. If we do not know this history and if we are not vigilant we are in grave danger of doing it again. Eugenics has not just gone away - it has morphed into "proper counseling".
I do not want to live in a world where we eliminate anyone. I want to live in a world where we welcome everyone, celebrate everyone - just the way they are, the whole package.
Colleen
Colleen,
The book 'Our Own Master Race' looks at the practice of eugenics in Canada with particular emphasis on disability. What I read there about Canada's connection to the extermination of people with disabilities in Germany shocked me. What they don't teach us is what we need to learn.
Dear Dave:
I absolutely agree. People need to know this history but we are not taught it. We are not as far from doing it again as many people like to think. Keep publishing your very thought provoking blog, Dave!
Colleen
Last night I was sitting and reading the comments section while watching my 3 year old who has Down syndrome splash and play in the bathtub with her 5 year old sister while my 37 week in-utero baby happily kicked at me. It turned my stomach and made me want to lock the outside doors and keep all three of them with me protected forever. Then I came back just now in the light of the day and saw Dave's response and felt like I could breathe again- and she could go outside and safely play with her sister.
I'm just going to come pull up a chair and sit by you Dave while I watch her. ((hugs)) Thank you for the perspective- as always. Not only could I breathe again but I can go back to this- to quote you in what might be my favorite quote to date:
"Sometimes love is a political act.
Sometimes family is an act of rebellion.
Sometimes hearts do just what they are supposed to do."
Our little act of rebellion is due in just two weeks. I may be old- but I have love and a family. Our hearts are so very blessed.
Anonymous said: "The doctor's post may be coming from a different angle - but is valid. I'm sure there isn't a parent in the world that wishes they had a baby with difficulties."
There is: me and my partner. We want to have disabled children. Why? Because as a lesbian couple, adoption is one of the ways we can have children and we would rather adopt a "hard to place" child, one who really needs us.
Most healthy babies in the adoption system will find good homes, but older children, or disabled children are less likely to find a permanent home, because everyone wants healthy babies. So, we want older children and children with disabilities, because they deserve a good home too, and we can provide one.
If my future child is blind, I already know Braille and will be able to help them with reading and pre-reading. If my future child is deaf, I already know sign language, and can communicate with them from day 1. If my future child has Downs, they will learn some things more slowly, or differently than other children, and they will do things when they are ready to do them, and we will love them for who they are and encourage them to do the best they can, whatever that is.
I do not hope I will have an able-bodied child. I just hope I will have children. Whatever they look like, whether they learn to speak with their mouths or their hands, whether they are potty trained at 2 or at 12 or need to use adult diapers, none of this matters to me.
If my child did end up being able bodied, I would love them all the same, of course.
Hey - it's not about you - and how you have abilities and talents to cope. It's not about your capacity for great love - it is about the person with the disability. You may be able to "manage" - but we have been managed enough.
Dave, the 1st comments are SPAM or very similar. Hate speech does not belong here. Delete them.
I "get it"' but at the same time I have to wonder why people notice other's differences rather than strengths. We are all different than one another and that is a good thing. We all have strengths and weakness and that is good as well. If you really think about it, the only place that label of Down Syndrome or any other name for a developmental disability is an advantage is for funding. I have heard Support Workers call those they are supporting "tools", I have also seen support workers that are embarrassed to be seen with the people they are supporting. When are we all considered just people, referred to by our first name or Mr., Miss, Mrs. Or Ms?
The only people I personally have a problem with is what I call "Stupid People" ...my definition of a Stupid Person is one that knows better, but plays stupid or knows better but will not stand for what they know is wrong. I still believe we have a long way to go to educate the world to treat people as people and not a label of a disability.
Here's to just being people!
Susan
From,
The Secretary to Prof Prem Pushpakaran
To, Mr/ Ms Dave
blog admistrator
It has come to the notice of Professor Prem, that you in your blog,"Rolling Around In My Head" is trying to malign his reputation by posting some trivial comment and make him in an unconfortable place,
Do One thing as suugested by the Professor Prem, to delete his comment (the first one on your dirty blog) as he will be free from disrepute. The comments made on him by other bloggers are unpardonable.
do delete his comment at once, as he is not interested in the welfare ur downs community from hereon.
Erina James
secretary to Professor of Bio-Ethics
new delhi
India
I'm late to this one, but... First, thanks for writing this, Dave and also thanks for letting the comments stand. This discussion is important.
That said, to the anonymous above who talked about whether it wouldn't be better to not have a DS child based on how that child would feel. I was struck by your statement that you'd leave your disability in the dust in a second (or words to that effect). And sure... life would be easier without it, but that isn't the choice here. The choice is life or no life, not life with or without a disability. I'm sure many people have looked on my parents with pity because they had a disabled child or maybe - OK, definitely - at me with pity because I have a disability, but it has never occurred to me or my parents to wish I wasn't there. Wish I didn't get juvenile rheumatoid arthritis? Many times, because it's not a fun existence when it flares. Wish I didn't have a disability? Y'know... Aside from the practical aspect of it which can be inconvenient and irritating, I'm fine with it. I like who I am and where I'm at in life and it's a product of everything that's happened in my life, including the disability. If I had the choice to go back and do it all again, I'm pretty sure I'd choose the same road.
To Ms James, as you can see he deleted his own comment.
Just wanted to say a big Thank You. For all the good work you do, for the respect you show to each of us & the way you teach in all you do... Even in the types of comments such as the " wheelchair" having bathroom issues (hah ha). Thank you for being you...
Only a bit more than a week after Down Syndrome Day, I was shocked by an Easter procession in Malta yesterday. Of all the participating children, one was visibly suffering from Down Syndrome. And guess which role they gave him to play? Have a look: http://andreasmoser.wordpress.com/2012/04/01/dingli-easter-procession-children/ - and be prepared to be shocked.
I apologize to respected professor Prem Raj Pushpakaran for my comments which has hurt him to his heart.
Dave, please delete my comments made on him.
please send my personal apology mail to him
Becca
To 'Becca' above. I can't believe you have created a fake webpage and are commenting as 'Becca'. I have been in contact with Becca and know that this simply isn't her. I don't understand the obsession you have with this blog post and the work of Dr. Pushpakaran. I suggest that you have reached as low as you can go and I'd suggest you stop.
Dave - thank you, thank you, thank you so much for getting in touch with me about the person posting as me (not sure how they managed to get my blogger profile pic in the profile, though). I would never, ever apologize to that guy for my comments - the guy needs some counseling himself for being so bold as to perpetuate such ridiculous misinformation. So, having said my bit, THIS is actually me. :-) Thanks again, Dave. You're awesome!!!!
Note to Colleen, my son and I are very interested in history, etc. and one part of history (to the present) is the topic of eugenics. I did find a website which is dedicated to the research and education of eugenics in Canada. I thought you may wish to look at their information. Perhaps, depending upon where you live, you may be able to attend one of their presentations (they had one that just went by in March).
http://eugenicsarchive.ca/
Hi Dave and Joe,
I've been studying genetics, etc. recently, as my son went for genetic counselling in January at the IWK in Halifax. I wanted to know exactly what "genetic counselling" meant ... and, in my search, I found that genetic counselling was NOT for the purpose of encouraging termination of a pregnancy; (at least in our case) ... it was for the purpose of my son and his future partner to know what to possibly expect if (when) he contributed to a pregnancy.
I know for myself, if I knew of significant genetically passed-on health issues ... I would likely have been better prepared ... and my son would likely have had better health care (as so many months/years were spent trying to figure out what his health issues were .... and also that many of his health issues were misdiagnosed. With genetic testing/counselling, at least you can be prepared to realize that you have a certain percent change of your baby having this or that. (As CHD's run in our family, this is important to know).
I did get a chance to read the dr's comments before he deleted them, and I didn't read into his comment that he was suggesting that "proper counselling" meant that he was implying termination/abortion would be the best choice.
Dr's are responsible for giving their patients ALL of the information. I know one friend of mine, when we were in high school, that her mother had a pregnancy which she chose to end (after very difficult decisions were made). It broke her mother's heart to end her pregnancy, and she cried at the ultrasound images she kept. Her mother was faced with either contniuing the pregnancy or both she and the baby dying. I know my friends mother never got over what she chose to do. I know if I were in the same exact circumstance ... I truly don't know what I would have done either; but, it's not for me to judge others for what they do. We are responsible for ourselves.
I know when I had my son, I was basically "on my own", and even then, the obstetrician recommended I have an abortion; I think because he was looking at the situation I was in; but, ultimately, it was up to me, and I didn't want to end my baby's life, just because I was unexpectantly pregnant. Although he was not planned (by me), I chose to have bim, and have loved him ever since.
Just my opinion.
Thanks,
Elizabeth
I'm a bit behind on this discussion, but I wanted to comment on the Hitler references. Did you know the US was very much involved in the Hitler eugenics movement? It was that movement that created the building of mental institutions in the 30's and 40's here in the US, and the continued warehousing of people with disabilities well into the 80's. I have three kids with Down syndrome, two adopted from Eastern Europe. The facilities they came from were built in the late 30's to house the "useless eaters" as Hitler, Stalin and Lenin referred to them. During the Holocaust the entire disabled population was murdered LONG before the concentration camps were filled. Sadly, the mentality surrounding those born with disabilities in some parts of the world, particularly those still in the shadow of those three leaders, hasn't changed much. I have watched children in these facilities be treated worse than the stray dogs on the street by caregivers who then go home and lovingly care for their own children. All because they've been taught by generations before them that these are the "useless eaters" with no ability to think, reason, or feel pain.
I remember being told my unborn son possibly had had Down's syndrome. The next step was supposed to be amnio, which I declined. I signed up for having a baby- not for having a PERFECT baby. I'm not anti abortion. I think that people who are not ready to have a baby should not be forced to do so,although obviously birth control is the best way to try and do that. But I feel strongly that being a parent is about accepting the child you have, not some perfect dream child. This holds true for me whether the child has a disability or not. You have to love the child you have, not the one you wish you have. Parenting is a crap shoot.
It turns out that my son did not have DS- he was born with other, mild disabilities that have taken a lot of appointments, therapies, effort, and time to support his development. People would say "oh you're so great I couldn't handle it" and I would feel like doing violence to them, because, really, what sane person would walk away from their BABY? Will you walk away if they are ill or injured, or become disabled? I hope that most of us wouldn't.
I think the 5 minute murder is a powerful metaphor, and one I will not forget soon.
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