Since I have been following the Down syndrome community, I have noticed two linguistic crusades running through it. One is about "People First Language" and the other is about the "r-word". I realized that I don't feel the same about these 2 themes.
I get that the "r-word" should be eradicated from polite society, just as other slurs are. It is offensive to use the words "retard" or "retarded" as an insult. Intentionally or not, it evokes images of people with intellectual disabilities and equates them with something bad and objectionable.
"People First Language", however, is different. I see that more as "call people the way they wish to be called," just as we refer to other groups as "African Americans" or "Native Americans" if that is their preference, we should call people with Trisomy 21 "People with Down syndrome" rather than "Downs people". However, it is not a slur to refer to them as "Downs people", any more than it is a slur to refer to African Americans as "Blacks" or "Colored" even as "Negroes". It is possible to speak respectfully and affectionately about people using non-standard terminology, as long as it is not offensive the way that the n-word and the r-word are. It is even possible to prefer non-standard terminology, for a variety of reasons. I have a bi-racial friend who refers to herself as "Colorful". Here is a persuasive argument against PFL from the inside.
What do you think?
Sunday, March 31, 2013
Thursday, March 21, 2013
Happy World Down Syndrome Day!
Today is March 21, designated World Down Syndrome Day. Why? Down Syndrome is the name of trisomy (3 copies) of chromosome #21. So if the date is 3-21, well... Kinda like last week 3-14 was pi day.
People in the Down Syndrome community are often upset when people use the word "retard" or "retarded" colloquially, going so far as to refer to it as the "r-word", in order to make it as taboo as the "n-word", and for the same reason. There is a whole campaign to "Spread the Word to End the Word". And many people say in their defense that they don't mean THAT, they just mean that something is stupid. And anyway, how is it that we can talk about being blind to the facts, or something falling on deaf ears, but calling something retarded is not ok?
I had this talk with one of my daughters a few weeks ago. I had mentioned this issue to her earlier, and apparently she pointed it out to her classmates when she heard them using it (I am soooo proud of her!), but couldn't really answer why it was not ok to use it if you are not actually referring to people with intellectual disabilities.
I thought about this a lot, and I think that the best parallel is how teenagers were frequently using the word "gay" in a disparaging context a few years ago. They still do it, but I sense that it is much less acceptable. The parallel I see is that rather than using the word metaphorically (c.f. "falling on deaf ears"), people were using it as a simple insult. Using a descriptor of a group of people as an insult is offensive.
Lisa Eicher posted eloquently about this last year, with this followup. But you might prefer to watch her adorable kids, as her daughter interviews her adopted brother with Down syndrome. Or just watch this:
People in the Down Syndrome community are often upset when people use the word "retard" or "retarded" colloquially, going so far as to refer to it as the "r-word", in order to make it as taboo as the "n-word", and for the same reason. There is a whole campaign to "Spread the Word to End the Word". And many people say in their defense that they don't mean THAT, they just mean that something is stupid. And anyway, how is it that we can talk about being blind to the facts, or something falling on deaf ears, but calling something retarded is not ok?
I had this talk with one of my daughters a few weeks ago. I had mentioned this issue to her earlier, and apparently she pointed it out to her classmates when she heard them using it (I am soooo proud of her!), but couldn't really answer why it was not ok to use it if you are not actually referring to people with intellectual disabilities.
I thought about this a lot, and I think that the best parallel is how teenagers were frequently using the word "gay" in a disparaging context a few years ago. They still do it, but I sense that it is much less acceptable. The parallel I see is that rather than using the word metaphorically (c.f. "falling on deaf ears"), people were using it as a simple insult. Using a descriptor of a group of people as an insult is offensive.
Lisa Eicher posted eloquently about this last year, with this followup. But you might prefer to watch her adorable kids, as her daughter interviews her adopted brother with Down syndrome. Or just watch this:
Sunday, March 17, 2013
One special one
Is there "one special child" waiting there for you?
No. There are many thousands of individual children, each of them totally real and unique, each special, each needy (though probably not waiting.... as they don't know that there is anything out there worth waiting for). Does the fact that there are many of them in any way diminish the "specialness" of each one? Does the overwhelming extent of the total need diminish from the specific needs of each particular child?
=====
This video is about 8 months old, but I just became aware of it yesterday. It is long (1.5 hours) but worthwhile.
The totality of the problem IS overwhelming. It is rooted in history, in poverty, and in prejudice. It is present in developing countries, in advanced countries, and in our own hearts. A few of the children featured in the video above have found homes since it was aired. We celebrate that, even while recognizing that they are but a drop in the bucket. Yes, their adoption and rescue made a world of difference for those individuals, but it did not change the system that led to their suffering in the first place.
=====
How do we make actual change happen? Clearly adoption of children who are trapped in bad systems is a part of it, but it cannot be the entirety of the solution. There are many other parts:
1. Seeing the humanity of people with disabilities in our own communities. Working to integrate them more fully into the life of our communities.
2. Creating a community where adoption of high-needs children is less overwhelming.
3. Maintaining communication with orphanages and mental institutions, so that they can better learn how to help children with disabilities reach their potential.
4. Maintaining connection to the children's birth countries, both for the benefit of the child, and so that parents and others in those countries can see children with disabilities who are happy and functional, not "useless eaters" who are to be hidden away in remote institutions.
=====
All too often, families in the special-needs adoption community remain inwards-looking. They take care of their own families, and they seek out similar families for affirmation and bonding. But it seems as though these mega-families are trying to solve the whole problem themselves, by adopting multiple children over and over again. My vision through Matir Asurim is to connect to the wider community in the ways indicated above, so that instead of 1% of the population adopting several children each, we might instead see 10% or more adopting one child each, so that adoption becomes normalized.
I think that Judaism, with its emphasis on community, is well-suited for this manner of addressing the problem. We are less concerned with "individual salvation" as with being a "holy nation". This is what Tikkun Olam is about. Not about that "one special one" but about society as a whole.
=====
I think part of the picture is family size. Communities that tend to support adoption also tend to have larger families. There are several reasons for this.
1. People who want only one or two children are more likely to be concerned with those children being "perfect". This is especially common for families with only children, who are showered with every advantage even before conception.
2. Likewise, people with only one or two children see each addition as overwhelming. Indeed, the change from zero to one is profound, and from one to two nearly so. It is easy for these parents to imagine the burden of further additions as linear. I know people look at me and my five children and think I am some kind of supermom. Not so! The challenges of larger families are different than those of smaller families, but not really harder. I recall being no more competent a parent of one, two or three children than I am now a parent of 5.
3. Larger families give parents a perspective on the uniqueness of each child. I remember when I had my first, thinking that "this is what child-rearing is about". She was the entire universe of children for me. Then I had my second, and everything became binary: Social/Loner, Right brain/Left brain etc. With more children, these false dichotomies dissolve. Each child is his/her own configuration of traits, strengths and challenges. As such, the idea of a child with more pronounced disabilities seems to fall more within the landscape of my child-concept than when that concept was defined by just one or two data points. In math, we say that 2 points define a line, 3 points define a plane, and 4 points define a space. The more data points we have, the greater the dimentionality of what we are able to imagine.
=====
So, is there "one special one"? Or many thousands of "special ones"? What does "special" mean? What will we make it mean?
No. There are many thousands of individual children, each of them totally real and unique, each special, each needy (though probably not waiting.... as they don't know that there is anything out there worth waiting for). Does the fact that there are many of them in any way diminish the "specialness" of each one? Does the overwhelming extent of the total need diminish from the specific needs of each particular child?
=====
This video is about 8 months old, but I just became aware of it yesterday. It is long (1.5 hours) but worthwhile.
The totality of the problem IS overwhelming. It is rooted in history, in poverty, and in prejudice. It is present in developing countries, in advanced countries, and in our own hearts. A few of the children featured in the video above have found homes since it was aired. We celebrate that, even while recognizing that they are but a drop in the bucket. Yes, their adoption and rescue made a world of difference for those individuals, but it did not change the system that led to their suffering in the first place.
=====
How do we make actual change happen? Clearly adoption of children who are trapped in bad systems is a part of it, but it cannot be the entirety of the solution. There are many other parts:
1. Seeing the humanity of people with disabilities in our own communities. Working to integrate them more fully into the life of our communities.
2. Creating a community where adoption of high-needs children is less overwhelming.
3. Maintaining communication with orphanages and mental institutions, so that they can better learn how to help children with disabilities reach their potential.
4. Maintaining connection to the children's birth countries, both for the benefit of the child, and so that parents and others in those countries can see children with disabilities who are happy and functional, not "useless eaters" who are to be hidden away in remote institutions.
=====
All too often, families in the special-needs adoption community remain inwards-looking. They take care of their own families, and they seek out similar families for affirmation and bonding. But it seems as though these mega-families are trying to solve the whole problem themselves, by adopting multiple children over and over again. My vision through Matir Asurim is to connect to the wider community in the ways indicated above, so that instead of 1% of the population adopting several children each, we might instead see 10% or more adopting one child each, so that adoption becomes normalized.
I think that Judaism, with its emphasis on community, is well-suited for this manner of addressing the problem. We are less concerned with "individual salvation" as with being a "holy nation". This is what Tikkun Olam is about. Not about that "one special one" but about society as a whole.
=====
I think part of the picture is family size. Communities that tend to support adoption also tend to have larger families. There are several reasons for this.
1. People who want only one or two children are more likely to be concerned with those children being "perfect". This is especially common for families with only children, who are showered with every advantage even before conception.
2. Likewise, people with only one or two children see each addition as overwhelming. Indeed, the change from zero to one is profound, and from one to two nearly so. It is easy for these parents to imagine the burden of further additions as linear. I know people look at me and my five children and think I am some kind of supermom. Not so! The challenges of larger families are different than those of smaller families, but not really harder. I recall being no more competent a parent of one, two or three children than I am now a parent of 5.
3. Larger families give parents a perspective on the uniqueness of each child. I remember when I had my first, thinking that "this is what child-rearing is about". She was the entire universe of children for me. Then I had my second, and everything became binary: Social/Loner, Right brain/Left brain etc. With more children, these false dichotomies dissolve. Each child is his/her own configuration of traits, strengths and challenges. As such, the idea of a child with more pronounced disabilities seems to fall more within the landscape of my child-concept than when that concept was defined by just one or two data points. In math, we say that 2 points define a line, 3 points define a plane, and 4 points define a space. The more data points we have, the greater the dimentionality of what we are able to imagine.
=====
So, is there "one special one"? Or many thousands of "special ones"? What does "special" mean? What will we make it mean?
Torah Connection - Vayakhel/Pekudei
Last week was a "double Parsha" -- both Vayak'hel and Pekudei are covered, although our congregation follows the triennial reading schedule, so only the end of Pekudei was read. (Next year we will read the beginning of Vayak'hel, and the following year, the middle section.)
This is something of a dry reading. Vayak'hel is the instructions for the construction of the Tabernacle, while Pekudei is an accounting of the materials used and the assembly of the worship accessories. How to relate this to today's reality, where we have neither Tabernacle nor Temple, and our worship bears little similarity to the priestly rituals prescribed in these chapters?
I looked through some of the interpretations on http://www.torah.org/ and, while these were interesting, most seemed to latch onto a small detail and read into it some greater message. (Check it out -- some cool, thought-provoking stuff!) Then I noticed a passage that several rabbis commented on. I looked it up, and found it right at the beginning of Vayak'hel:
This is something of a dry reading. Vayak'hel is the instructions for the construction of the Tabernacle, while Pekudei is an accounting of the materials used and the assembly of the worship accessories. How to relate this to today's reality, where we have neither Tabernacle nor Temple, and our worship bears little similarity to the priestly rituals prescribed in these chapters?
I looked through some of the interpretations on http://www.torah.org/ and, while these were interesting, most seemed to latch onto a small detail and read into it some greater message. (Check it out -- some cool, thought-provoking stuff!) Then I noticed a passage that several rabbis commented on. I looked it up, and found it right at the beginning of Vayak'hel:
Chapter 35
1 Moses then convoked the whole Israelite community and said to them:
These are the things that the Lord has commanded you to do: 2 On six days work may be done, but on the seventh day you shall have a sabbath of complete rest, holy to the Lord; whoever does any work on it shall be put to death. 3 You shall kindle no fire throughout your settlements on the sabbath day.
Only then do the instructions for the Tabernacle-building begin! Rabbi Yaakov Menken suggests one explanation for this, having to do with the importance of Shabbat, that it should not be violated even for the construction of the Temple. However, that still does not answer why these 2 topics are combined in the first place.
As I see it, such juxtapositions are never a coincidence in the Torah. If they are together, then they are connected. And in fact, there is a connection: The Sabbath is a sacred time, and the Tabernacle is a sacred place. The juxtaposition suggests to me that the instructions for constructing the Tabernacle are analogous to how we should observe - or construct - the Sabbath.
Let us count the parallels:
1. Community - The Tabernacle was first and foremost a "Tent of Meeting" - a place for all the tribes of Israel to come and worship as one. The Sabbath is likewise a time for Jews to worship as a community - men, women and children - at a synagogue (Beit K'nesset = House of Gathering).
2. Tzedakah (Charity) - Just as donations were solicited from the entire people for the construction of the Tabernacle, so the coming of Shabbat is often marked by charitable giving, as well as hospitality to Jews who find themselves away from home (but are prohibited from paying for a hotel or for meals on Shabbat).
3. Special clothes - Just as the Kohanim (priests) wore special clothes in the Tabernacle, so we dress up extra nice for Shabbat.
4. Ner Tamid (eternal flame) - Parallel to the Sabbath candles
5. Setting of bread - Parallel to the challah
So, as we observe Shabbat, let the rituals direct our minds towards truly making it sacred time, a temporal temple, as it were. Let us become a Nation of Priests, as we were commanded to be, by donning our "Priestly Vestments" on Shabbat and thus becoming a force for holiness on earth.
Friday, March 15, 2013
Special Needs Bat Mitzvah
Two for one for this parsha! Ki Tissa was also the occasion of the Bat Mitzvah of a sweet girl with Cerebral Palsy who attends our synagogue. I have known her since she was a little toddler crawling around using just her arms. I watched her gradually learn to use a walker, then crutches, then just one crutch, until now she is able to walk short distances unassisted. Her family has moved a bit further away, so I haven't seen as much of them in recent years except for Bat Mitzvah preparation.
Her Bat Mitzvah was incredibly well attended. She is well-loved in the congregation, as she has a very sweet, soft-spoken manner about her. She brought this to her reading of the parsha. Instead of focusing on the negativity, she saw each participant -- G*d, Moses and Aaron -- as giving and getting "another chance". Each one, in turn, refused to give up on the other. Thus she took from this low point in the story an uplifting message which she related to her own experience of not giving up, and having family and friends not give up on her. What a great message!
Her Bat Mitzvah was incredibly well attended. She is well-loved in the congregation, as she has a very sweet, soft-spoken manner about her. She brought this to her reading of the parsha. Instead of focusing on the negativity, she saw each participant -- G*d, Moses and Aaron -- as giving and getting "another chance". Each one, in turn, refused to give up on the other. Thus she took from this low point in the story an uplifting message which she related to her own experience of not giving up, and having family and friends not give up on her. What a great message!
Torah Connection - Ki Tissa
A bit behind again, I'm afraid...
Ki Tissa is the chapter of the Golden Calf. The Israelites have just witnessed all the miracles in Egypt and the splitting of the sea of reeds, and were eagerly awaiting Moses at Mt. Sinai, for him to bring the tablets of the covenant, inscribed with the very finger of G*d. Alas, they were impatient, and in that moment created an idol for themselves. Doesn't it always seem that we fall just at the moment we are about to win big?
So Moses sees this, breaks the tablets, then grinds the Golden Calf to a powder and makes the people drink a slurry of it. Then he speaks to his brother Aaron - who was supposed to have been responsible, but instead participated actively in this act.
Ugh! What a lying coward is Aaron! This is the man destined to be High Priest?! He is not even repentant!!! He disavows all responsibility for the making of the idol, instead blaming the people for instigating it, and then incredibly contends that the calf sponaneously formed from the gold which was cast into the fire.
This is reminding me of the exchange in Genesis Chapter 3 between G*d and Adam and Eve after they ate the apple. There, too, G*d was asking for a brief period of patience, and was fully intending to offer the fruit of the Tree of Life to them upon the Sabbath (remember, this is all happening on the Sixth Day!), and they go and ruin it by breaking the one commandment they were given! The dialogue which follows is likewise parallel to what we saw above:
And what punishment is meted out? Adam and Eve are cast out of the Garden of Eden; Aaron and the Israelites are sentenced to die out in the desert, so that only their children will enter the Promised Land. In boht cases, the punishment for impatience, mistrust, and idolatry is to be kept out of the Good Place. Perhaps we can regain the Garden and the Promised Land by reversing these traits? Perhaps the Good Place is precisely that state of being at one and at peace with the Divine Plan?
Ki Tissa is the chapter of the Golden Calf. The Israelites have just witnessed all the miracles in Egypt and the splitting of the sea of reeds, and were eagerly awaiting Moses at Mt. Sinai, for him to bring the tablets of the covenant, inscribed with the very finger of G*d. Alas, they were impatient, and in that moment created an idol for themselves. Doesn't it always seem that we fall just at the moment we are about to win big?
So Moses sees this, breaks the tablets, then grinds the Golden Calf to a powder and makes the people drink a slurry of it. Then he speaks to his brother Aaron - who was supposed to have been responsible, but instead participated actively in this act.
Moses said to Aaron, "What did this people do to you that you have brought such great sin upon them?" 22 Aaron said, "Let not my lord be enraged. You know that this people is bent on evil. 23 They said to me, 'Make us a god to lead us; for that man Moses, who brought us from the land of Egypt — we do not know what has happened to him.' 24 So I said to them, 'Whoever has gold, take it off!' They gave it to me and I hurled it into the fire and out came this calf!"
Ugh! What a lying coward is Aaron! This is the man destined to be High Priest?! He is not even repentant!!! He disavows all responsibility for the making of the idol, instead blaming the people for instigating it, and then incredibly contends that the calf sponaneously formed from the gold which was cast into the fire.
This is reminding me of the exchange in Genesis Chapter 3 between G*d and Adam and Eve after they ate the apple. There, too, G*d was asking for a brief period of patience, and was fully intending to offer the fruit of the Tree of Life to them upon the Sabbath (remember, this is all happening on the Sixth Day!), and they go and ruin it by breaking the one commandment they were given! The dialogue which follows is likewise parallel to what we saw above:
9 The Lord God called out to the man and said to him, "Where are you?" 10 He replied, "I heard the sound of You in the garden, and I was afraid because I was naked, so I hid." 11 Then He asked, "Who told you that you were naked? Did you eat of the tree from which I had forbidden you to eat?" 12 The man said, "The woman You put at my side — she gave me of the tree, and I ate." 13 And the Lord God said to the woman, "What is this you have done!" The woman replied, "The serpent duped me, and I ate."Interestingly, in both cases, G*d doesn't seem to care that his people are spineless and lacking integrity. He punishes the transgression itself, and no more. On the other hand, passing the buck doesn't get either Adam and Eve or Aaron and the Israelites off the hook.
And what punishment is meted out? Adam and Eve are cast out of the Garden of Eden; Aaron and the Israelites are sentenced to die out in the desert, so that only their children will enter the Promised Land. In boht cases, the punishment for impatience, mistrust, and idolatry is to be kept out of the Good Place. Perhaps we can regain the Garden and the Promised Land by reversing these traits? Perhaps the Good Place is precisely that state of being at one and at peace with the Divine Plan?
Special needs in the IDF
Thank you to my online friend Hevel for this link today.
Only in Israel are there programs in place to specifically enable people with physical, mental and developmental disabilities to contribute to the armed forces, in very real capacities, to the fullest extent of their capabilities, including an officers' course for the physically challenged! Especially given the central role of the IDF in Israeli society, this is huge! Although people with medical and other special needs are exempt from duty, being permitted to voluntarily enlist for service allows them to participate fully in society, instead of being left out. This is true tzedakah.
Man, I love Israel!
Only in Israel are there programs in place to specifically enable people with physical, mental and developmental disabilities to contribute to the armed forces, in very real capacities, to the fullest extent of their capabilities, including an officers' course for the physically challenged! Especially given the central role of the IDF in Israeli society, this is huge! Although people with medical and other special needs are exempt from duty, being permitted to voluntarily enlist for service allows them to participate fully in society, instead of being left out. This is true tzedakah.
Man, I love Israel!
Fear and Pain
Pain and fear are important signaling devices for the body and soul, respectively. It is the loss of pain sensation that causes leprosy sufferers to lose limbs, as they are unable to feel any injury. Loss of fear can cause us to do stupid things and walk into mortal danger.
We are not meant to live in pain and fear, though. Pain and fear are signaling devices intended to prompt action. If we touch a hot pan, we should recoil, not "get over the pain" while our hand is slowly sauteing... If we have muscle pains while walking, touching our toes, or reaching for a high shelf, however, we would want to address the underlying problem, not just avoid the action that caused the pain. So pain tells us to look for the problem, and then address it, whatever it is. It may be a simple recoil, or a difficult diagnosis and lengthy treatment. There are times that we need to "push through the pain", but permanently living with pain is not something that we would choose while we can still seek alternatives.
Likewise with fear. Fear of heights, darkness, and loud noises is perfectly rational! All of these are potentially risky situations. In each case, though, once we ascertain the actual danger level, our fears either subside or prompt us to take protective actions, such as holding on to a handrail, or preparing to defend against a potential attacker. These are rational actions which ameliorate the dangers that were signaled by the fear. As in the case of pain, though, being paralyzed by fear is not productive. Avoiding height or darkness in all situations is not a healthy way to live. Ignoring height or darkness in all situations can lead to injury or death.
What are you afraid of? How can you address the fears? Not ignore them or avoid them, but actually identify the causes, resolve them, and move on with life?
We are not meant to live in pain and fear, though. Pain and fear are signaling devices intended to prompt action. If we touch a hot pan, we should recoil, not "get over the pain" while our hand is slowly sauteing... If we have muscle pains while walking, touching our toes, or reaching for a high shelf, however, we would want to address the underlying problem, not just avoid the action that caused the pain. So pain tells us to look for the problem, and then address it, whatever it is. It may be a simple recoil, or a difficult diagnosis and lengthy treatment. There are times that we need to "push through the pain", but permanently living with pain is not something that we would choose while we can still seek alternatives.
Likewise with fear. Fear of heights, darkness, and loud noises is perfectly rational! All of these are potentially risky situations. In each case, though, once we ascertain the actual danger level, our fears either subside or prompt us to take protective actions, such as holding on to a handrail, or preparing to defend against a potential attacker. These are rational actions which ameliorate the dangers that were signaled by the fear. As in the case of pain, though, being paralyzed by fear is not productive. Avoiding height or darkness in all situations is not a healthy way to live. Ignoring height or darkness in all situations can lead to injury or death.
What are you afraid of? How can you address the fears? Not ignore them or avoid them, but actually identify the causes, resolve them, and move on with life?
Wednesday, March 13, 2013
Baruch Dayan Emet
Since I became aware of the wholesale abandonment and neglect of children with special needs in most of the world - even places I thought were "civilized" - there were a handful of children who struck a special chord in my heart. One of them was taken home by his parents! A couple have been adopted, and I am following their stories as they emerge from their cocoon of institutionalization and becoming the brilliant butterflies they were meant to be. And a couple are trapped behind the Russian adoption ban, unless a European or domestic Russian family comes forward for them.
Sasha was spoken for. A family had committed to adopting him, to take him out of the Level 4 Institute he had recently been transferred to and bring him home. To help him recover from the severe malnutrition he had clearly been suffering from. To provide for his many known and unknown medical needs. And to love him unconditionally.
They were due to travel to Ukraine in 5 weeks.
35 days.
And now he is dead. Most likely buried in an unmarked grave in a field among the other children who died before their time, for the same reason or similar reasons. Maybe a cross is planted over his undersized corpse. But no-one will visit his grave. No one will pray over it.
Sasha was the second child listed on Reece's Rainbow to die as an orphan since the beginning of 2013. The first one was a little girl with the screen name "Stacy", also with Down syndrome, also recently transferred:
It has been documented that the overwhelming majority (estimated around 85%) of children with Down syndrome who are placed in these "mental institutions" die within a year of transfer.
How many more will needlessly die this year, for want of food, medical care, and LOVE?
Adonay natan. Adonai lakakh. Yehi shem Adonai mevorakh.
The Lord gave, and the Lord has taken away. Blessed be the name of the Lord.
They were going to name him Jonathan - "The Lord gave".
Sasha was spoken for. A family had committed to adopting him, to take him out of the Level 4 Institute he had recently been transferred to and bring him home. To help him recover from the severe malnutrition he had clearly been suffering from. To provide for his many known and unknown medical needs. And to love him unconditionally.
They were due to travel to Ukraine in 5 weeks.
35 days.
And now he is dead. Most likely buried in an unmarked grave in a field among the other children who died before their time, for the same reason or similar reasons. Maybe a cross is planted over his undersized corpse. But no-one will visit his grave. No one will pray over it.
Sasha was the second child listed on Reece's Rainbow to die as an orphan since the beginning of 2013. The first one was a little girl with the screen name "Stacy", also with Down syndrome, also recently transferred:
It has been documented that the overwhelming majority (estimated around 85%) of children with Down syndrome who are placed in these "mental institutions" die within a year of transfer.
How many more will needlessly die this year, for want of food, medical care, and LOVE?
Adonay natan. Adonai lakakh. Yehi shem Adonai mevorakh.
The Lord gave, and the Lord has taken away. Blessed be the name of the Lord.
They were going to name him Jonathan - "The Lord gave".
Sunday, March 10, 2013
Jewish Disability Awareness Month bookgroup meeting
I really wanted to post about this earlier. Nearly 2 weeks ago I attended a meeting of a Jewish Disability Awareness Month book group. My rabbi told me about it the night before! There were about 10 people there, most of whom were either parents or educators of children with special needs. When I arrived they were having a phone conference with Elaine Hall, the author of Now I See the Moon, an autobiographical account of her life with her autistic son, who was adopted as a toddler from Russia. He is also the protagonist of "Autism: The Musical". Although autism is very different from Down syndrome, I have a feeling that in the next few decades we will see a revolution in our understanding of autism and the ability of autistic individuals to function in society, as has happened (and continues to happen!) with Down syndrome. Just as long as they don't identify the "autism gene" and start aborting affected children.... Ugh.
Later, we discussed the book and movie Front of the Class by Brad Cohen, who has Tourette's Syndrome. It was a great discussion! He is an awesome well-adjusted guy who doesn't let his disability get in his way. Even as a middle-school teacher, he tells his students on the first day of class, "This is my condition, this is what happens, it's no big deal, now open your books to page 1." And the kids learn to see beyond his tics and absolutely adore him!
I found it interesting in conversations with parents, that when the first or second child is born with a disability, the difficulties of managing it seem to loom a lot larger, and they are more reluctant to have another. While in larger families, the disabled child is more likely to be accepted into the routine. This seems to me an extension of what I have observed in family size situations in general. An only child is typically obsessed over by the parents, showered with every enrichment opportunity. A second child still gets a lot, but often feels "cheated" out of what the first got.... While in larger families, there is a mellowing out, and an understanding that there are intangibles which are not measured in hours of after-school activities, electronic gadgetry and trips to Disney World. Of course kids (and adults) still want these special treats, but at some point the relationships between the siblings takes over and creates a life of its own. When your kids are mad at you and reach for each other for comfort, that is actually really special.
Later, we discussed the book and movie Front of the Class by Brad Cohen, who has Tourette's Syndrome. It was a great discussion! He is an awesome well-adjusted guy who doesn't let his disability get in his way. Even as a middle-school teacher, he tells his students on the first day of class, "This is my condition, this is what happens, it's no big deal, now open your books to page 1." And the kids learn to see beyond his tics and absolutely adore him!
I found it interesting in conversations with parents, that when the first or second child is born with a disability, the difficulties of managing it seem to loom a lot larger, and they are more reluctant to have another. While in larger families, the disabled child is more likely to be accepted into the routine. This seems to me an extension of what I have observed in family size situations in general. An only child is typically obsessed over by the parents, showered with every enrichment opportunity. A second child still gets a lot, but often feels "cheated" out of what the first got.... While in larger families, there is a mellowing out, and an understanding that there are intangibles which are not measured in hours of after-school activities, electronic gadgetry and trips to Disney World. Of course kids (and adults) still want these special treats, but at some point the relationships between the siblings takes over and creates a life of its own. When your kids are mad at you and reach for each other for comfort, that is actually really special.
Saturday, March 9, 2013
Busy!
Irony - my last post was about "hiddenness", and then I go "hiding" for almost 2 weeks..... So much going on, and I keep wanting to blog, but don't get around to it!
Maybe that's why G*d was hiding in the examples cited in the last post -- too busy orchestrating the next miracle..?
Maybe that's why G*d was hiding in the examples cited in the last post -- too busy orchestrating the next miracle..?
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