Wow... what an incredible experience. It was powerful, heartbreaking, comforting, peaceful and loving.
I was amazed at the number of people who came out and really, really touched by some people who I didn't expect to see there. I was so happy to see my friend, Meta, there as well - and we included her in our prayers. Meta is also fighting this beast and is undergoing chemotherapy treatments.
I am also very thankful to our pastor who did a wonderful job, considering he's never done a prayer service like this before. Our church doesn't normally have prayer services like this, so we were both in unchartered waters a bit.
But, he started off the service with these words to this effect that I thought were very wise:
"This service is not happening out of a spirit of desperation, as if 'well, nothing has worked so far, so I guess we have to pray to God for a miracle'. No....I believe it is the work of God that brings us to a point of expressing our trust in God....We are here tonight to pray to God because he hears and answers prayer. Praying for healing is part of that. Praying for his daily strength, peace and blessing is also part of that. We come here tonight in hope.....
We sang a few of my favourite, traditional hymns. My sister reminded me later that we sang "Great is thy Faithfulness" on the exact same day (Sept 23) at almost the exact same time (7:00 pm) last year - the occassion of the celebration of my parents' 45th wedding anniversary. I'm not sure if believe in people who have passed away "being there" at certain times, but if it happens, I'm positive that means my Mom was there with us in spirit.
I was so overwhelmed by all the prayers that were being said. It was difficult at times too, but I felt great comfort in feeling all that energy. At one point, I even felt called to come up to the pulpit area and kneel on the steps. I don't know why. I'm pretty sure that God doesn't listen to prayer more because you're kneeling than if you're sitting, but I felt the urge to go up and kneel and pray. Tom came with me. I was still fairly emotional from the prayers we had just said, when I felt hands on my shoulders. At first I started crying some more when I felt that emotion of these people (and I didn't know who they were) come through me but then I felt an amazing sense of peace wash over me. Wow - was that powerful. Now, you have to remember that I didn't not grow up in an "hallelujah, Praise the Lord" type of church. This type of service and these feelings were new to me. God really was there with us that night.
Then, after the service was over, I was blessed to receive the hugs, kisses, handshakes and wonderful words of many of my family, friends and fellow church goers. That ended the evening perfectly - receiving love from so many people. This will keep me going for a long while.
My Pastor provided a list of specific prayer requests for those who were there that night. If you pray and would like something to pray for specifically, here's what was provided:
- for healing: physical, we dare to ask for a miracle
- for perserverance: continuing to live fully to the Lord, even in sickness
- for character: for being an example and encouragement to others, to lead others to trust in the Lord
- for hope - for today, tomorrow and forever.
Monday, September 24, 2007
Tuesday, September 18, 2007
"Oh I'm so sorry"....
Yesterday, Tom and I were at a wonderful event...a garden party held as a fundraiser for our local hospital. It is filled with amazing food and drink from various local restaurants and stores. Anyways, I ended up talking to someone I had never met before. We got on the topic of children and how old mine were etc. Normally I don't mention that Ryan has Down syndrome as it's really not relevant, but I did this time - "our youngest son, Ryan, has Down syndrome". Her response was one that I think is probably fairly typical: "oh,,,, I'm so sorry". I immediately replied, "don't be sorry, there's nothing to be sorry about. Absolutely not - he's wonderful". To her credit, she took my response and immediately said, "yeah, why would I say I'm sorry??".
Afterwards I got to thinking about this short exchange. I think views like hers are more the norm than not. I know that before I had Ryan I would view families who had a disabled child with a small amount of pity. That was then. I know better now. BUT...how can I work to change the views of other people so that they don't think what this woman and I thought? What can I do so that, when I inform someone that I have a child with Down syndrome, that they just continue the conversation as if it's a non-issue? A huge part of it is living our lives as full participants in our various communities. We won't hide.... we'll treat Ryan like we treat Kurtis... and that means regular swimming lessons, participation in church, eating out at restaurants, etc etc. In other words.... leading a regular life. People will see that individuals with Down syndrome can lead a regular life.
I remember the first time I saw someone with Down syndrome smoking. I have to confess that my first reaction was that someone should take those away from her. And then I gave myself a mental kick in the butt and realized that she is fully entitled to smoke if she so wants - she's an adult and can do what she wants - and that includes smoking. There are so many other things we can do too. Raise awareness by having pictures and stories in the papers. Have people with DS working in places where they see a lot of people (ie grocery store). And very importantly, work with the medical profession - the ones who are, unfortunately, the first line of information to prospective parents AND who unfortunately, mostly have an outdated doom-and-gloom view of people with DS without even knowing anyone with DS. And then today, I read this article.
I know I'm copying a lot of articles here, but I think they are worth the read. This speech was presented at the NDSC Conference on August 5, 2007. It is a long article, but well worth it.
http://www.patriciaebauer.com/2007/08/23/stand-tall/
STAND TALL
by Patricia E. Bauer
Long ago, my husband and I thought we had the world figured out. We had good educations, good jobs, nice offices, even preferential parking spaces. We thought we had it made.
Then, a little more than 23 years ago, Margaret showed up, providing us with the most important learning experience of our lives. Our first order of business was trying to figure out this whole Down syndrome thing, of course, but ultimately it dawned on us that the effect of an extra chromosome here or there was the least of what we needed to learn. Over time, we came to reevaluate our core values, and to understand that much of what we had been led to believe – about what makes a family happy, what makes a life worthwhile — was misguided.
I’m sure I’m not alone in saying that for the first few years of Margaret’s life we worked very, very hard to do everything we could to help Margaret become “normal.” It was only later that we realized what most families get to eventually: that “normal” wasn’t the point. Our real goal was to help Margaret be Margaret. It was only by letting go of the concept of normal that we were able to see our daughter as the delightful person that she truly is, not obscured by some burdensome word, some arbitrary social ideal that had nothing to do with any of us.
Like it or not, though, we have to admit that we as a nation have been sold this concept of “normal,” and we’ve fallen for it. Somehow, while the disability community was out of the room, the world of medicine established a diagnosable standard called “normal” and now we’re all trying as hard as we can to achieve it.
Starting this year, it is recommended by the professional organizations representing obstetricians and gynecologists in the United States and Canada that all pregnant women be offered prenatal screening for Down syndrome. All pregnant women. Prenatal screening tests are now well on their way to being standard of care. Insurance companies are covering them. And since Down syndrome is not a condition that can be repaired in utero, it must be fairly assumed that the purpose of this testing is to allow – and urge — women to terminate their pregnancies, which is in fact what has been happening about 90 percent of the time when Down syndrome is diagnosed prenatally.
Let me just underscore that, to make sure we’re all on the same page. Studies have shown that nine out of ten pregnancies in which there is a prenatal diagnosis of Down syndrome end in termination.
This is a painful topic to talk about, I recognize, and it’s made more painful by the very ironic fact that these recommendations have come at a time when people with disabilities have more legal protections than ever before.
Not only that, people with Down syndrome are in general healthier and having a better quality of life than at any time in history. This is the first generation to benefit from early intervention, inclusion, improved health care and better educational opportunities, and they are blowing up yesterday’s old data. Increasingly, they’re completing high school, getting jobs, living more independently. Some are driving; some are getting married. Imagine: I met a woman with Down syndrome the other day who was part of a relay team that swam the English Channel. These are people who are living full lives and making contributions to their communities.
We laugh at our house every time we see some article in the media about how people are “suffering” from Down syndrome. Margaret, my daughter, has just moved into her own apartment with a couple of her girlfriends. She’s sure not suffering. And just the other day, self-advocate Audrey Wagnon delivered the same message in her speech to the full NDSC convention. Here’s how she said it: “I’m having the best life ever!”
But – oddly — we live in a time in history in which the faces of our loved ones have come to symbolize something in the public mind that is very much at odds with our life experience. People see our family members and think what they’ve been taught to think. They think our children are tragedies. Yet we who are privileged to live with them know that, despite some of the frustrations of day-to-day existence, our lives are also filled with possibility and love and joy.
So why the disconnect between our lives and society’s vision of them? Perhaps we should start by acknowledging the obvious: prejudices, biases and fears of disability run deep in our society, nourished by years of history and reinforced among other things by ignorance, gaps in the healthcare and educational systems and negative media images.
Physicians tell me that women want prenatal screens because they are very fearful of having a child with a disability.
Among other things, they fear that the financial burden would crush them or that they wouldn’t be able to get a decent education for their child. They’re afraid, too, that they would be held accountable for having a child with a disability, and that there would be people who would blame them for failing to prevent the birth of such a child. They are afraid of stigma and ridicule. Sadly, these are not unreasonable fears.
But that’s only one piece of the puzzle we face. Here are few more:
– Puzzle piece number two. Prospective parents are suing their doctors if they don’t get a so-called “perfect baby,” leading to skyrocketing insurance costs and doctors who want to run every test possible to prevent litigation. Not long ago, a Florida jury awarded a couple more than $20 million because their doctor failed to warn them that their son would be born with a genetic syndrome.
– Puzzle piece number three. Physicians, nurses and other health care providers are giving their patients negative, outdated, biased or incomplete information about Down syndrome, depriving them of the ability to make their own informed choices based on accurate information instead of negative stereotypes.
– Puzzle piece number four. Financial demands on doctors mean they have to process more and more patients in less and less time, giving them scant opportunity to discuss tests and deliver diagnoses in a sensitive, thoughtful compassionate way. Women are reporting that these rushed interactions feel coercive.
– Puzzle piece number five. Medical schools don’t offer clinical training about people with intellectual disabilities.
– Which brings us to puzzle piece number six. Let’s not forget that prenatal diagnostics is a profitable industry, in which hundreds of millions of dollars are spent each year. A substantial portion of that cash flow swells the accounts of the obstetricians and gynecologists who see pregnant women. By contrast, I should point out, the amount of money spent on research into treatments and processes to improve the lives of people with Down syndrome is minimal at best.
All these factors, I’m sorry to say, have combined to create an atmosphere in which there is a growing presumption that pregnant women should be tested for Down syndrome – a presumption, stoked by ignorance and stereotypes, that children like ours are expendable, that children like ours are without value, and that children like ours impose an unwanted cost on society. Somehow, without our knowledge or participation, a cost-benefit analysis has been applied to our children and they aren’t measuring up.
You may be wondering: How did we ever get to this point?
For the purposes of this conversation, let’s start back in the ‘50s. Most of you won’t remember it, but people with disabilities then had not been granted the right to go to public school. Doctors didn’t think that people with intellectual disabilities were capable of learning, and routinely recommended that they be sent away to institutions. During the ’50s in this country, an estimated half a million children were institutionalized, often under the most abusive and degrading conditions.
So when a French geneticist named Jerome Lejeune discovered the extra 21st chromosome that causes Down syndrome in the late ’50s, his discovery caused many to hope that treatments would soon be found. As you of course know, that didn’t happen. A far more straightforward task, from a scientific point of view, was the development of tests that could be used for prenatal diagnostics. Those tests really took off after abortion was legalized in 1973.
Doctors and scientists took a public role in recasting the definition of healthy fetuses and legitimate abortions, and what were called “therapeutic” abortions came to be regarded as a legitimate and desirable way to prevent or eliminate Down syndrome. It was in some ways just an accident of history that these so-called therapeutic abortions became well entrenched before our society was able to see what individuals with Down syndrome, given a chance, could do.
It is, as author Michael Berube has written, a bitter paradox: even though we have barely begun to explore the ways in which we could include people with disabilities in our society, we are devoting precious time and resources to developing better ways of spotting and eliminating these people before they are born.
Particularly troubling is the fact that this shift – to preventing Down syndrome by attempting to prevent the births of children who have it – was largely engineered by members of the healing professions, the very people who are charged with the responsibility of protecting vulnerable populations.
So now we are left with a harsh reality indeed. The implicit message the American College of Obstetricians & Gynecologists seems to be sending is this: even though racial, cultural and ethnic diversity are valued and supported in our society, genetic diversity is not. It seems that it’s more important to be “normal” than to be “human.” Or maybe we should view this as less a philosophical discussion than a pragmatic one. For OB/GYN’s, it’s better for business to deliver only babies that the medical profession calls “good outcomes.”
Somehow, along the way, the professional organization representing these doctors has failed to notice that they have embarked upon the elimination of an entire class of people who have a history of oppression, discrimination and exclusion.
I know we empathize with today’s young parents. Their finances are limited. They have grown up in an era of fear, taught to be afraid of strangers and wary of the strange. In the obstetrician’s office they trade their fears for the illusion of control — but in the process they are giving away much of what defines America at its best: a society that assumes responsibility for those who are vulnerable, a society that accepts those who are different, a society marked by generosity, liberty and freedom of thought.
These may sound like abstract concepts, but they’re not. The consequences of all these uninformed individual decisions, made in the privacy of the obstetrician’s office, are being played out before our eyes every day. We see them when our family members are the subject of unwanted stares. When people talk about how someone “had” to get rid of a pregnancy because it wasn’t perfect. When people tell us that special ed kids “cost too much.” When people ask us, sometimes in ways that seem unfriendly, whether we had “the test.” Or even why we didn’t have “the test.” When medical professionals look at our beloved children and say “that shouldn’t have happened.”
Let’s face it: people with Down syndrome have a catastrophic PR problem. The doom and gloom talk has gone largely unchallenged for far too long.
It gives me great pain to tell you all this, because I know you love your family members as much as my husband and my son and I love Margaret. I know, too, that you share our vision that people with Down syndrome are valued, contributing and vibrant members of our families and our communities.
We come together at reunions like these to affirm the value of our family members’ lives, secure in the knowledge that their extra chromosome is NOT the most important thing about them. They belong; they dream big dreams; they contribute; they deserve respect. What makes their lives difficult is not their genetic makeup; it’s the uninformed attitudes of others.
We know this, of course, but it’s not enough for us to share the message with one another. We need to put it out where all the world can see.
Let’s start with what we can do as individuals. As I’ve gone around the conference, I’ve heard about some great things that people are doing in their own communities. Things like:
–Helping to educate the doctors and genetic counselors in their area by visiting their classes or professional meetings.
–Building relationships with hospitals, and talking with families who have a fresh diagnosis.
– Monitoring their local news media, and holding them accountable for their coverage and their use of language about people with disabilities.
These are great steps, but let’s not stop there. Let’s dream even bigger.
It’s time for us to insist that our organizations advocate forcefully on behalf of people with Down syndrome in ways that are targeted to reach decision-makers, to reach medical professionals, and of course to reach the general public. Here are some of the things we need to do.
1. We need to provide disability awareness training and accurate information directly to obstetricians, to gynecologists, and to the professionals who assist them. They need to hear the nuanced, compassionate message that is at the core of diversity and human rights: all people have value and dignity and are worthy of celebration. We’ve told them this nicely. Now perhaps it’s time to turn up the volume.
2. We need to put out lots and lots of well-designed materials that will teach doctors how to discuss prenatal screening and diagnoses with their patients. Senators Kennedy and Brownback have recently reintroduced their bill on this topic. Whether it’s this bill or another one, we need to find a way for doctors to get the materials they need.
3. We need to improve medical school curriculums, which include almost nothing about children with disabilities.
4. We need to hold publishers accountable for the editorial content of their pregnancy handbooks. Take a look in your local bookstore, and notice what those books say about our young people. If they carry anything at all, it’s more than likely a cold, clinical list of symptoms and diagnoses, guaranteed to strike fear in the heart of any pregnant woman. We must change this.
5. We need to use technology to convey our message. Where does your average 20-or 30-something look for medical information? Right. The Internet. If we truly want to help people make informed decisions, we need to get involved in the Internet in a big way, both in print and in video. Our content needs to be useful and modern.
6. We need to enable prospective parents to see that people with disabilities live good lives, and that they have warm, sustaining relationships with their families and friends. Presently, that information is only coming to them anecdotally, if at all. Imagine how different things would be if people could be referred to a website that allowed them to click on videos that would show them footage of people with Down syndrome, of all ages and ability levels, going through their daily lives. America’s teenagers are communicating actively through Youtube – why shouldn’t we?
7. We need to speak up to challenge the old stereotypes about our family members and ourselves. We’re not victims. We’re not heroes. We’re just ordinary people sharing slightly extraordinary lives with people we love and who love us.
I talked earlier about people who sometimes ask us about whether we had “the test.” Here’s what I think they really want to know. Did you, or would you, choose this person to be in your family? Let me tell you my answer to that question.
When my husband and I decided to have children, we were kids. (Okay, we were in our early 30s. But viewed from a distance, that sure looks young now!) Sure, we had lots of education, degrees and experiences, but there was a lot we didn’t know:
– We didn’t know what it meant to be a parent.
– We didn’t know that there was no such a thing as normal.
– And we sure didn’t know that that it was possible to have a happy, thriving, loving family with a child who was not the same as everybody else’s.
Fortunately for us, we have learned a thing or two at the University of Margaret since then. We learned
– No child is “normal” — and neither are we;
– We, like all parents, need to get over the notion of our children meeting some arbitrary standards of perfection that we couldn’t possibly achieve ourselves; and
– We choose our children, and each other, over and over, every day of our lives.
In short, my husband and I have been privileged to share our lives with someone who is a constant reminder of some essential truths: the importance of family, the strength of unconditional love, the dignity and value of vulnerable people, and the fact that IQ points are not a good predictor of personal happiness or quality of life.
As we all ponder how to carry these messages to the outside world, as we get ready to leave the safe haven of our reunion today, let’s remember that we are all stronger together than we are separately.
But talking among ourselves, while important, won’t get the message out. We have to communicate directly with those not in this room.
A couple of years ago, a newspaper running a piece I’d written asked for a family photo, including Margaret. I gulped, feeling exposed, and called my husband to ask his thoughts. He said, “Stand tall; run the picture.” We did.
That is my message to all of us: Stand tall; get out the message.
People will listen.
We can do it.
Together.
Afterwards I got to thinking about this short exchange. I think views like hers are more the norm than not. I know that before I had Ryan I would view families who had a disabled child with a small amount of pity. That was then. I know better now. BUT...how can I work to change the views of other people so that they don't think what this woman and I thought? What can I do so that, when I inform someone that I have a child with Down syndrome, that they just continue the conversation as if it's a non-issue? A huge part of it is living our lives as full participants in our various communities. We won't hide.... we'll treat Ryan like we treat Kurtis... and that means regular swimming lessons, participation in church, eating out at restaurants, etc etc. In other words.... leading a regular life. People will see that individuals with Down syndrome can lead a regular life.
I remember the first time I saw someone with Down syndrome smoking. I have to confess that my first reaction was that someone should take those away from her. And then I gave myself a mental kick in the butt and realized that she is fully entitled to smoke if she so wants - she's an adult and can do what she wants - and that includes smoking. There are so many other things we can do too. Raise awareness by having pictures and stories in the papers. Have people with DS working in places where they see a lot of people (ie grocery store). And very importantly, work with the medical profession - the ones who are, unfortunately, the first line of information to prospective parents AND who unfortunately, mostly have an outdated doom-and-gloom view of people with DS without even knowing anyone with DS. And then today, I read this article.
I know I'm copying a lot of articles here, but I think they are worth the read. This speech was presented at the NDSC Conference on August 5, 2007. It is a long article, but well worth it.
http://www.patriciaebauer.com/2007/08/23/stand-tall/
STAND TALL
by Patricia E. Bauer
Long ago, my husband and I thought we had the world figured out. We had good educations, good jobs, nice offices, even preferential parking spaces. We thought we had it made.
Then, a little more than 23 years ago, Margaret showed up, providing us with the most important learning experience of our lives. Our first order of business was trying to figure out this whole Down syndrome thing, of course, but ultimately it dawned on us that the effect of an extra chromosome here or there was the least of what we needed to learn. Over time, we came to reevaluate our core values, and to understand that much of what we had been led to believe – about what makes a family happy, what makes a life worthwhile — was misguided.
I’m sure I’m not alone in saying that for the first few years of Margaret’s life we worked very, very hard to do everything we could to help Margaret become “normal.” It was only later that we realized what most families get to eventually: that “normal” wasn’t the point. Our real goal was to help Margaret be Margaret. It was only by letting go of the concept of normal that we were able to see our daughter as the delightful person that she truly is, not obscured by some burdensome word, some arbitrary social ideal that had nothing to do with any of us.
Like it or not, though, we have to admit that we as a nation have been sold this concept of “normal,” and we’ve fallen for it. Somehow, while the disability community was out of the room, the world of medicine established a diagnosable standard called “normal” and now we’re all trying as hard as we can to achieve it.
Starting this year, it is recommended by the professional organizations representing obstetricians and gynecologists in the United States and Canada that all pregnant women be offered prenatal screening for Down syndrome. All pregnant women. Prenatal screening tests are now well on their way to being standard of care. Insurance companies are covering them. And since Down syndrome is not a condition that can be repaired in utero, it must be fairly assumed that the purpose of this testing is to allow – and urge — women to terminate their pregnancies, which is in fact what has been happening about 90 percent of the time when Down syndrome is diagnosed prenatally.
Let me just underscore that, to make sure we’re all on the same page. Studies have shown that nine out of ten pregnancies in which there is a prenatal diagnosis of Down syndrome end in termination.
This is a painful topic to talk about, I recognize, and it’s made more painful by the very ironic fact that these recommendations have come at a time when people with disabilities have more legal protections than ever before.
Not only that, people with Down syndrome are in general healthier and having a better quality of life than at any time in history. This is the first generation to benefit from early intervention, inclusion, improved health care and better educational opportunities, and they are blowing up yesterday’s old data. Increasingly, they’re completing high school, getting jobs, living more independently. Some are driving; some are getting married. Imagine: I met a woman with Down syndrome the other day who was part of a relay team that swam the English Channel. These are people who are living full lives and making contributions to their communities.
We laugh at our house every time we see some article in the media about how people are “suffering” from Down syndrome. Margaret, my daughter, has just moved into her own apartment with a couple of her girlfriends. She’s sure not suffering. And just the other day, self-advocate Audrey Wagnon delivered the same message in her speech to the full NDSC convention. Here’s how she said it: “I’m having the best life ever!”
But – oddly — we live in a time in history in which the faces of our loved ones have come to symbolize something in the public mind that is very much at odds with our life experience. People see our family members and think what they’ve been taught to think. They think our children are tragedies. Yet we who are privileged to live with them know that, despite some of the frustrations of day-to-day existence, our lives are also filled with possibility and love and joy.
So why the disconnect between our lives and society’s vision of them? Perhaps we should start by acknowledging the obvious: prejudices, biases and fears of disability run deep in our society, nourished by years of history and reinforced among other things by ignorance, gaps in the healthcare and educational systems and negative media images.
Physicians tell me that women want prenatal screens because they are very fearful of having a child with a disability.
Among other things, they fear that the financial burden would crush them or that they wouldn’t be able to get a decent education for their child. They’re afraid, too, that they would be held accountable for having a child with a disability, and that there would be people who would blame them for failing to prevent the birth of such a child. They are afraid of stigma and ridicule. Sadly, these are not unreasonable fears.
But that’s only one piece of the puzzle we face. Here are few more:
– Puzzle piece number two. Prospective parents are suing their doctors if they don’t get a so-called “perfect baby,” leading to skyrocketing insurance costs and doctors who want to run every test possible to prevent litigation. Not long ago, a Florida jury awarded a couple more than $20 million because their doctor failed to warn them that their son would be born with a genetic syndrome.
– Puzzle piece number three. Physicians, nurses and other health care providers are giving their patients negative, outdated, biased or incomplete information about Down syndrome, depriving them of the ability to make their own informed choices based on accurate information instead of negative stereotypes.
– Puzzle piece number four. Financial demands on doctors mean they have to process more and more patients in less and less time, giving them scant opportunity to discuss tests and deliver diagnoses in a sensitive, thoughtful compassionate way. Women are reporting that these rushed interactions feel coercive.
– Puzzle piece number five. Medical schools don’t offer clinical training about people with intellectual disabilities.
– Which brings us to puzzle piece number six. Let’s not forget that prenatal diagnostics is a profitable industry, in which hundreds of millions of dollars are spent each year. A substantial portion of that cash flow swells the accounts of the obstetricians and gynecologists who see pregnant women. By contrast, I should point out, the amount of money spent on research into treatments and processes to improve the lives of people with Down syndrome is minimal at best.
All these factors, I’m sorry to say, have combined to create an atmosphere in which there is a growing presumption that pregnant women should be tested for Down syndrome – a presumption, stoked by ignorance and stereotypes, that children like ours are expendable, that children like ours are without value, and that children like ours impose an unwanted cost on society. Somehow, without our knowledge or participation, a cost-benefit analysis has been applied to our children and they aren’t measuring up.
You may be wondering: How did we ever get to this point?
For the purposes of this conversation, let’s start back in the ‘50s. Most of you won’t remember it, but people with disabilities then had not been granted the right to go to public school. Doctors didn’t think that people with intellectual disabilities were capable of learning, and routinely recommended that they be sent away to institutions. During the ’50s in this country, an estimated half a million children were institutionalized, often under the most abusive and degrading conditions.
So when a French geneticist named Jerome Lejeune discovered the extra 21st chromosome that causes Down syndrome in the late ’50s, his discovery caused many to hope that treatments would soon be found. As you of course know, that didn’t happen. A far more straightforward task, from a scientific point of view, was the development of tests that could be used for prenatal diagnostics. Those tests really took off after abortion was legalized in 1973.
Doctors and scientists took a public role in recasting the definition of healthy fetuses and legitimate abortions, and what were called “therapeutic” abortions came to be regarded as a legitimate and desirable way to prevent or eliminate Down syndrome. It was in some ways just an accident of history that these so-called therapeutic abortions became well entrenched before our society was able to see what individuals with Down syndrome, given a chance, could do.
It is, as author Michael Berube has written, a bitter paradox: even though we have barely begun to explore the ways in which we could include people with disabilities in our society, we are devoting precious time and resources to developing better ways of spotting and eliminating these people before they are born.
Particularly troubling is the fact that this shift – to preventing Down syndrome by attempting to prevent the births of children who have it – was largely engineered by members of the healing professions, the very people who are charged with the responsibility of protecting vulnerable populations.
So now we are left with a harsh reality indeed. The implicit message the American College of Obstetricians & Gynecologists seems to be sending is this: even though racial, cultural and ethnic diversity are valued and supported in our society, genetic diversity is not. It seems that it’s more important to be “normal” than to be “human.” Or maybe we should view this as less a philosophical discussion than a pragmatic one. For OB/GYN’s, it’s better for business to deliver only babies that the medical profession calls “good outcomes.”
Somehow, along the way, the professional organization representing these doctors has failed to notice that they have embarked upon the elimination of an entire class of people who have a history of oppression, discrimination and exclusion.
I know we empathize with today’s young parents. Their finances are limited. They have grown up in an era of fear, taught to be afraid of strangers and wary of the strange. In the obstetrician’s office they trade their fears for the illusion of control — but in the process they are giving away much of what defines America at its best: a society that assumes responsibility for those who are vulnerable, a society that accepts those who are different, a society marked by generosity, liberty and freedom of thought.
These may sound like abstract concepts, but they’re not. The consequences of all these uninformed individual decisions, made in the privacy of the obstetrician’s office, are being played out before our eyes every day. We see them when our family members are the subject of unwanted stares. When people talk about how someone “had” to get rid of a pregnancy because it wasn’t perfect. When people tell us that special ed kids “cost too much.” When people ask us, sometimes in ways that seem unfriendly, whether we had “the test.” Or even why we didn’t have “the test.” When medical professionals look at our beloved children and say “that shouldn’t have happened.”
Let’s face it: people with Down syndrome have a catastrophic PR problem. The doom and gloom talk has gone largely unchallenged for far too long.
It gives me great pain to tell you all this, because I know you love your family members as much as my husband and my son and I love Margaret. I know, too, that you share our vision that people with Down syndrome are valued, contributing and vibrant members of our families and our communities.
We come together at reunions like these to affirm the value of our family members’ lives, secure in the knowledge that their extra chromosome is NOT the most important thing about them. They belong; they dream big dreams; they contribute; they deserve respect. What makes their lives difficult is not their genetic makeup; it’s the uninformed attitudes of others.
We know this, of course, but it’s not enough for us to share the message with one another. We need to put it out where all the world can see.
Let’s start with what we can do as individuals. As I’ve gone around the conference, I’ve heard about some great things that people are doing in their own communities. Things like:
–Helping to educate the doctors and genetic counselors in their area by visiting their classes or professional meetings.
–Building relationships with hospitals, and talking with families who have a fresh diagnosis.
– Monitoring their local news media, and holding them accountable for their coverage and their use of language about people with disabilities.
These are great steps, but let’s not stop there. Let’s dream even bigger.
It’s time for us to insist that our organizations advocate forcefully on behalf of people with Down syndrome in ways that are targeted to reach decision-makers, to reach medical professionals, and of course to reach the general public. Here are some of the things we need to do.
1. We need to provide disability awareness training and accurate information directly to obstetricians, to gynecologists, and to the professionals who assist them. They need to hear the nuanced, compassionate message that is at the core of diversity and human rights: all people have value and dignity and are worthy of celebration. We’ve told them this nicely. Now perhaps it’s time to turn up the volume.
2. We need to put out lots and lots of well-designed materials that will teach doctors how to discuss prenatal screening and diagnoses with their patients. Senators Kennedy and Brownback have recently reintroduced their bill on this topic. Whether it’s this bill or another one, we need to find a way for doctors to get the materials they need.
3. We need to improve medical school curriculums, which include almost nothing about children with disabilities.
4. We need to hold publishers accountable for the editorial content of their pregnancy handbooks. Take a look in your local bookstore, and notice what those books say about our young people. If they carry anything at all, it’s more than likely a cold, clinical list of symptoms and diagnoses, guaranteed to strike fear in the heart of any pregnant woman. We must change this.
5. We need to use technology to convey our message. Where does your average 20-or 30-something look for medical information? Right. The Internet. If we truly want to help people make informed decisions, we need to get involved in the Internet in a big way, both in print and in video. Our content needs to be useful and modern.
6. We need to enable prospective parents to see that people with disabilities live good lives, and that they have warm, sustaining relationships with their families and friends. Presently, that information is only coming to them anecdotally, if at all. Imagine how different things would be if people could be referred to a website that allowed them to click on videos that would show them footage of people with Down syndrome, of all ages and ability levels, going through their daily lives. America’s teenagers are communicating actively through Youtube – why shouldn’t we?
7. We need to speak up to challenge the old stereotypes about our family members and ourselves. We’re not victims. We’re not heroes. We’re just ordinary people sharing slightly extraordinary lives with people we love and who love us.
I talked earlier about people who sometimes ask us about whether we had “the test.” Here’s what I think they really want to know. Did you, or would you, choose this person to be in your family? Let me tell you my answer to that question.
When my husband and I decided to have children, we were kids. (Okay, we were in our early 30s. But viewed from a distance, that sure looks young now!) Sure, we had lots of education, degrees and experiences, but there was a lot we didn’t know:
– We didn’t know what it meant to be a parent.
– We didn’t know that there was no such a thing as normal.
– And we sure didn’t know that that it was possible to have a happy, thriving, loving family with a child who was not the same as everybody else’s.
Fortunately for us, we have learned a thing or two at the University of Margaret since then. We learned
– No child is “normal” — and neither are we;
– We, like all parents, need to get over the notion of our children meeting some arbitrary standards of perfection that we couldn’t possibly achieve ourselves; and
– We choose our children, and each other, over and over, every day of our lives.
In short, my husband and I have been privileged to share our lives with someone who is a constant reminder of some essential truths: the importance of family, the strength of unconditional love, the dignity and value of vulnerable people, and the fact that IQ points are not a good predictor of personal happiness or quality of life.
As we all ponder how to carry these messages to the outside world, as we get ready to leave the safe haven of our reunion today, let’s remember that we are all stronger together than we are separately.
But talking among ourselves, while important, won’t get the message out. We have to communicate directly with those not in this room.
A couple of years ago, a newspaper running a piece I’d written asked for a family photo, including Margaret. I gulped, feeling exposed, and called my husband to ask his thoughts. He said, “Stand tall; run the picture.” We did.
That is my message to all of us: Stand tall; get out the message.
People will listen.
We can do it.
Together.
Another great article
I wasn't going to post anything about this "event" that happened in Italy, but I loved this response piece in the Toronto Sun. http://www.thestar.com/article/253107
The article talks about what happened, but I'll recap it briefly:
- a woman in Italy was pregnant with twins
- via tests, they found out one of the twins hand Down syndrome, the other did not
- the woman opted to have the child with Down syndrome aborted but leave the other one alone
- due to some medical oversight or mistake (they say the twins shifted positions in between the ultrasound and the abortion), the doctor aborted the "normal" twin and left the one with DS living
- the woman was furious, upset etc etc
- she then had the remaining twin (the one with DS) also aborted
As she was in Italy, the Vatican responded to this situation, calling it what it is: eugenics.
'Culture of perfection' destroying us
Sep 08, 2007 04:30 AM Helen Henderson
An Italian woman who sought to abort one of the twins she was expecting is at the centre of an international furor over society's attitude to children with disabilities.
When she was 18 weeks pregnant, the 38-year-old from Milan was told that one of her twin baby girls had Down syndrome, characterized by an extra chromosome and intellectual disability. She asked doctors to abort that fetus. By mistake, they aborted the other. Subsequently, the second fetus was also aborted.
No surprise that the pro-Vatican L'Osservatore Romano censured the abortions, which were performed in June but made public only last month. But the newspaper also encapsulated the crux of the debate when it said the story exposes "the culture of perfection that imposes the exclusion of all that does not appear beautiful, glowing, positive, captivating.
"What remains is emptiness, the desert of a life without content, though perfectly planned," the newspaper continued.
And there you have it.
In a world where biotechnology and genetic engineering strive for the smartest, the strongest and the most conventionally beautiful, there is less and less room for diversity.
Yet until society embraces diversity, until it willingly and unstintingly makes provision for those who are not cast from the common mould, we will never achieve peace, inwardly or outwardly.
And without peace, we will simply self-destruct – all of us, and sooner rather than later.
Twenty-two years ago, Toronto's Ruth Halperin gave birth to twins. Her daughter Daniella has Down syndrome. Daniella's twin brother Jesse does not.
"It is society that needs to be changed, not the child," says Halperin.
Daniella, who says she loves to dance, is helping at a daycare centre, a work placement that is part of the vocational course she is taking at Seneca College. Jesse is in Holland, doing a semester overseas as part of his training to be a lawyer.
Halperin counts both her twins as blessings.
"Daniella has such a full life," she said in a telephone interview last week as her daughter got ready to welcome friends for a barbeque. She said she is shocked by the news out of Italy, where a fierce public debate is dominating news.
"What happened in this hospital was not a medical abortion but an abortion done for the purposes of eugenics," one Italian senator is quoted as saying, referring to the philosophy, commonly associated with Nazi Germany, that humankind can be improved through selective reproduction.
Kids with disabilities are experts in wisdom and beauty and fortitude that come from deep inside. They nurture their nurturers against the fear, ignorance and closed minds that seek to block them from belonging.
If biotechnologists were smart, this is what they would be tapping in their race to "enhance" evolution.
The Italian mother-to-be is a victim of the cult of ignorance, spread in language that speaks volumes about attitudes. She is reported to have told the Corriere della Sera that she and her husband are "desperate over this terrible mistake" and were consulting lawyers.
The twin with Down syndrome is variously referred to in stories about the incident as "the sick fetus"and "the wrong twin."
"We must create a different emotional environment, a culture of hope," says Keith Powell, executive director of Community Living Ontario, which advocates for the full inclusion of people identified as having intellectual disabilities. "We need an affirmative action campaign to advance the gifts of people with disabilities."
Let's start right now as individuals to do the right thing.
Helen Henderson's column appears every second Saturday. Read more of her columns at thestar.com/access.
The article talks about what happened, but I'll recap it briefly:
- a woman in Italy was pregnant with twins
- via tests, they found out one of the twins hand Down syndrome, the other did not
- the woman opted to have the child with Down syndrome aborted but leave the other one alone
- due to some medical oversight or mistake (they say the twins shifted positions in between the ultrasound and the abortion), the doctor aborted the "normal" twin and left the one with DS living
- the woman was furious, upset etc etc
- she then had the remaining twin (the one with DS) also aborted
As she was in Italy, the Vatican responded to this situation, calling it what it is: eugenics.
'Culture of perfection' destroying us
Sep 08, 2007 04:30 AM Helen Henderson
An Italian woman who sought to abort one of the twins she was expecting is at the centre of an international furor over society's attitude to children with disabilities.
When she was 18 weeks pregnant, the 38-year-old from Milan was told that one of her twin baby girls had Down syndrome, characterized by an extra chromosome and intellectual disability. She asked doctors to abort that fetus. By mistake, they aborted the other. Subsequently, the second fetus was also aborted.
No surprise that the pro-Vatican L'Osservatore Romano censured the abortions, which were performed in June but made public only last month. But the newspaper also encapsulated the crux of the debate when it said the story exposes "the culture of perfection that imposes the exclusion of all that does not appear beautiful, glowing, positive, captivating.
"What remains is emptiness, the desert of a life without content, though perfectly planned," the newspaper continued.
And there you have it.
In a world where biotechnology and genetic engineering strive for the smartest, the strongest and the most conventionally beautiful, there is less and less room for diversity.
Yet until society embraces diversity, until it willingly and unstintingly makes provision for those who are not cast from the common mould, we will never achieve peace, inwardly or outwardly.
And without peace, we will simply self-destruct – all of us, and sooner rather than later.
Twenty-two years ago, Toronto's Ruth Halperin gave birth to twins. Her daughter Daniella has Down syndrome. Daniella's twin brother Jesse does not.
"It is society that needs to be changed, not the child," says Halperin.
Daniella, who says she loves to dance, is helping at a daycare centre, a work placement that is part of the vocational course she is taking at Seneca College. Jesse is in Holland, doing a semester overseas as part of his training to be a lawyer.
Halperin counts both her twins as blessings.
"Daniella has such a full life," she said in a telephone interview last week as her daughter got ready to welcome friends for a barbeque. She said she is shocked by the news out of Italy, where a fierce public debate is dominating news.
"What happened in this hospital was not a medical abortion but an abortion done for the purposes of eugenics," one Italian senator is quoted as saying, referring to the philosophy, commonly associated with Nazi Germany, that humankind can be improved through selective reproduction.
Kids with disabilities are experts in wisdom and beauty and fortitude that come from deep inside. They nurture their nurturers against the fear, ignorance and closed minds that seek to block them from belonging.
If biotechnologists were smart, this is what they would be tapping in their race to "enhance" evolution.
The Italian mother-to-be is a victim of the cult of ignorance, spread in language that speaks volumes about attitudes. She is reported to have told the Corriere della Sera that she and her husband are "desperate over this terrible mistake" and were consulting lawyers.
The twin with Down syndrome is variously referred to in stories about the incident as "the sick fetus"and "the wrong twin."
"We must create a different emotional environment, a culture of hope," says Keith Powell, executive director of Community Living Ontario, which advocates for the full inclusion of people identified as having intellectual disabilities. "We need an affirmative action campaign to advance the gifts of people with disabilities."
Let's start right now as individuals to do the right thing.
Helen Henderson's column appears every second Saturday. Read more of her columns at thestar.com/access.
Saturday, September 15, 2007
Details on the Prayer Service
Here are some details of the prayer service:
Sunday, September 23, 1997 at 6:30 pm.
It will be held at First Christian Reformed Church in Guelph
If anyone needs directions, just email me at annettel100@hotmail.com or call me.
This isn't a prayer service just for me, although that will be one of the main reasons for the service. We will also pray for Marisa, and Meta - two women I've met on this journey. We will also focus on expressing our trust in God. As I said, there will be time for individual and small group prayer, but if you're not comfortable speaking in public, don't. (you definitely won't be required to pray in front of the whole congregation up on the pulpit.)
Sunday, September 23, 1997 at 6:30 pm.
It will be held at First Christian Reformed Church in Guelph
If anyone needs directions, just email me at annettel100@hotmail.com or call me.
This isn't a prayer service just for me, although that will be one of the main reasons for the service. We will also pray for Marisa, and Meta - two women I've met on this journey. We will also focus on expressing our trust in God. As I said, there will be time for individual and small group prayer, but if you're not comfortable speaking in public, don't. (you definitely won't be required to pray in front of the whole congregation up on the pulpit.)
Thursday, September 13, 2007
Happy 10th!
Happy 10th Anniversary to my dear husband and I. Tom, I cannot believe it's been 10 years already - how time has flown! And you know what they say... time flies when you're having fun.
I knew when I married you that life would never be dull - and it hasn't. It's been an amazing 10 years - some highs and some lows... lots of good times and some bad times. You've made life fun - and we have had some adventures, haven't we? We've been blessed with two wonderful, spirited boys and I thank you for being a good father to them.
I love you Tom! I pray that we have many, many more anniversaries together!
I knew when I married you that life would never be dull - and it hasn't. It's been an amazing 10 years - some highs and some lows... lots of good times and some bad times. You've made life fun - and we have had some adventures, haven't we? We've been blessed with two wonderful, spirited boys and I thank you for being a good father to them.
I love you Tom! I pray that we have many, many more anniversaries together!
Wednesday, September 12, 2007
"The Blessing of a Down Syndrome Child"
This piece is two months old, but I thought I'd share it anyways. I'd like to re-title it using 'people first language": "The Blessing of a Child with Down syndrome".
http://www.cbn.com/CBNnews/191521.aspx
http://www.cbn.com/CBNnews/191521.aspx
Thursday, September 06, 2007
Much better now, thank you...
I received a call yesterday from someone at the school. This person had been involved in the "allocation" of students to classes. We had a great, frank and open talk about my concerns and why they did things the way they did. I feel so much better after that conversation. She took my point about keeping parents informed about how curriculum is being met by including this in the monthly newsletter and will be asking the teachers to do that. I was actually impressed with the thought that was put into the allocation of students to the various classes. And some of the reasons for why Kurtis was put in the class he was were entirely true (I did say we had a frank and open conversation! LOL) I'm still concerned about something but as I said before, we'll just have to wait and see how it develops - she did note my concern on that as well and we'll probably chat about it throughout the school year.
And.. as for the reason for Ryan having two aides.... that was also for a very valid reason and after hearing the reason, I just couldn't argue with it! Anyone who knows Ryan knows that he is a very busy boy... and requires a lot of energy to be with. So, they didn't think it was fair that one EA had Ryan for the entire day while some other EAs had a very "easy" child. The EA we had over the past two years was a bundle of energy and apparently could handle Ryan for the entire day - but not all people can. So, I really couldn't argue with that logic as I know all too well how busy Ryan is - that's the reason he needs an EA. Ryan gets distracted very easily and just has a TON of energy and doesn't sit still very well. So far I've been very impressed with the dedication of the two EAs that Ryan has... I mentioned something to one of them and the next thing I knew, it had already been addressed and the supplies brought to the classroom!
So, after all that, I'm feeling much better. There's still going to be a lot of work between both kids, but I think we can manage it. That glass is looking a bit fuller now! :)
And.. as for the reason for Ryan having two aides.... that was also for a very valid reason and after hearing the reason, I just couldn't argue with it! Anyone who knows Ryan knows that he is a very busy boy... and requires a lot of energy to be with. So, they didn't think it was fair that one EA had Ryan for the entire day while some other EAs had a very "easy" child. The EA we had over the past two years was a bundle of energy and apparently could handle Ryan for the entire day - but not all people can. So, I really couldn't argue with that logic as I know all too well how busy Ryan is - that's the reason he needs an EA. Ryan gets distracted very easily and just has a TON of energy and doesn't sit still very well. So far I've been very impressed with the dedication of the two EAs that Ryan has... I mentioned something to one of them and the next thing I knew, it had already been addressed and the supplies brought to the classroom!
So, after all that, I'm feeling much better. There's still going to be a lot of work between both kids, but I think we can manage it. That glass is looking a bit fuller now! :)
Tuesday, September 04, 2007
Worry, worry.... WHY?
I was so worried about school starting today that I had some trouble sleeping last night (which is very unusual for me). I'm coming to the conclusion that I'm a bit of a pessimist as I was envisioning all the bad things - and not even thinking of the good.
The reason I was worried was because Kurtis was placed in the one class I DIDN'T want him in. He was placed in the 2/3 split (he's in grade 3). There are a number of reasons I didn't want him in this 2/3 split - the primary one's being that I was worried about him not getting adequate coverage of the grade 3 curriculum and being bored by being with grade 2's and "doing" grade 2 work again.
Then when we arrived, things got even worse (according to me):
- Kurtis's class ended up with two teachers - one in the morning and one in the afternoon
- there are only 5 other grade 3's in Kurtis's class
- Ryan has two EA's (educational assistants) - one for the morning and one for the afternoon
Well, after talking to a few parents AND talking to Kurtis, who did enjoy his first day, I have a feeling things will be OK.
The two teachers that Kurtis has are both highly respected and liked. They'll be each teaching different subjects so there's no worry about overlapping there. And, as my sister pointed out, the second teacher will likely have more energy and enthusiasm as she didn't teach in the morning. And since grade 3 is a testing year (for the government), the teachers will have to stick to and teach the curriculum. There are a few other things I am concerned about, but we'll have to keep an eye on those and see how things develop. In any event, Kurtis told me he had a good day, so that's a great sign.
And I'm still not thrilled with Ryan having two EAs. Ryan tests every new person he meets and knows exactly how to do this! So, he really needs consistent discipline and every new person he interacts with decreases that consistency. It also means I have to work with two EA's instead of one - more work for me! I know they are both wonderful EAs - I just wish we had one of them for the whole day! I doubt things will change so we'll just have to work together closely - perhaps setting up monthly meetings to discuss how things are going.
So...my mind is alot lighter now. I'll have to keep working on the glass 1/2 full thing!
The reason I was worried was because Kurtis was placed in the one class I DIDN'T want him in. He was placed in the 2/3 split (he's in grade 3). There are a number of reasons I didn't want him in this 2/3 split - the primary one's being that I was worried about him not getting adequate coverage of the grade 3 curriculum and being bored by being with grade 2's and "doing" grade 2 work again.
Then when we arrived, things got even worse (according to me):
- Kurtis's class ended up with two teachers - one in the morning and one in the afternoon
- there are only 5 other grade 3's in Kurtis's class
- Ryan has two EA's (educational assistants) - one for the morning and one for the afternoon
Well, after talking to a few parents AND talking to Kurtis, who did enjoy his first day, I have a feeling things will be OK.
The two teachers that Kurtis has are both highly respected and liked. They'll be each teaching different subjects so there's no worry about overlapping there. And, as my sister pointed out, the second teacher will likely have more energy and enthusiasm as she didn't teach in the morning. And since grade 3 is a testing year (for the government), the teachers will have to stick to and teach the curriculum. There are a few other things I am concerned about, but we'll have to keep an eye on those and see how things develop. In any event, Kurtis told me he had a good day, so that's a great sign.
And I'm still not thrilled with Ryan having two EAs. Ryan tests every new person he meets and knows exactly how to do this! So, he really needs consistent discipline and every new person he interacts with decreases that consistency. It also means I have to work with two EA's instead of one - more work for me! I know they are both wonderful EAs - I just wish we had one of them for the whole day! I doubt things will change so we'll just have to work together closely - perhaps setting up monthly meetings to discuss how things are going.
So...my mind is alot lighter now. I'll have to keep working on the glass 1/2 full thing!
A Prayer Service
Just wanted to let everyone know that my church will be holding a prayer service for me (and others in my church who are facing the same type of issue). The details have yet to be worked out but it will be on September 23, 2007 in the late afternoon or early evening.
Although one of the key purposes of this service is to pray for healing for me, it is not the only purpose. Again, the details are to be worked out, but we will focus on God's leading through our lives, our trust in Him, and joyfully praising our God. Ultimately, it will be a service of hope. We will pray - together and individually, we will sing a few songs, and we will read some Scripture and some poetry or stories.
So, if you are so inclined, feel free to come out to this prayer service. You won't be asked to pray in front of the whole audience, so don't let that scare you off. If you want the details, email me at annettel100@hotmail.com.
Although one of the key purposes of this service is to pray for healing for me, it is not the only purpose. Again, the details are to be worked out, but we will focus on God's leading through our lives, our trust in Him, and joyfully praising our God. Ultimately, it will be a service of hope. We will pray - together and individually, we will sing a few songs, and we will read some Scripture and some poetry or stories.
So, if you are so inclined, feel free to come out to this prayer service. You won't be asked to pray in front of the whole audience, so don't let that scare you off. If you want the details, email me at annettel100@hotmail.com.
Subscribe to:
Posts (Atom)