Today was the first meeting of the year at the Down Syndrome Learning Program, affiliated with the Boston Children's Hospital. Like last year, there were 2 sessions. In the first session I worked with the "Level 2" class, which I recognized as last year's "Level 1"s. They have grown so much! So much more coordinated, their speech was so much improved, and at least half of them already knew their letters and numbers. Then I worked with the "Level 3" group, who were likewise impressive in their ability to flow with the schedule and engage with the instruction. I felt so energized and happy -- and looking forward to seeing some of them at our local Buddy Walk in 2 weeks!
Here is their video from the early years:
The children featured in this video are now 12-13 years old, and have graduated to the "Lunch Buddies" program. I saw several of them on my way out. What wonderful promise!
Saturday, September 28, 2013
Just in time!
With little over a week before his 16th birthday would make him ineligible for American international adoption, a family has committed to adopting "Brenton".
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| Now he really has a reason to be so happy -- and he doesn't even know it yet! |
Friday, September 27, 2013
Haftorah Beam - Bereishit
The Haftorah for Bereishit is Isaiah 42:5-43:10
It opens,
5 Thus said God the Lord,
Who created the heavens and stretched them out,
Who spread out the earth and what it brings forth,
Who gave breath to the people upon it
And life to those who walk thereon:
6 I the Lord, in My grace, have summoned you,
And I have grasped you by the hand.
I created you, and appointed you
A covenant people, a light of nations —
7 Opening eyes deprived of light,
Rescuing prisoners from confinement,
From the dungeon those who sit in darkness.
This is clearly connected thematically to the story of creation, and specifically the creation of light out of darkness. It stresses the role of the Jewish people as G*d's partners in creation, as well as the beneficiaries of G*d's Creation. The first step of Genesis was the creation of light. The first step of acting within the Covenant, as a Light of Nation, is opening eyes.
We are furthermore encouraged to see each day as the first day. In fact, Bereishit does not refer to the first day as "first" but simply as "one day". If no days ever followed, it would have been sufficient. So we see that every day is "one day" -- sufficient onto itself to make a new start:
10 Sing to the Lord a new song,
His praise from the ends of the earth —
The reading continues, echoing the struggles of Adam and Eve:
Chapter 43We are expected to struggle with temptations, but be assured that G*d is with us and wishes us to succeed. We are promised that even when banished from the Garden of Eden, that G*d will be with us in all our difficulties.
1But now thus said the Lord —
Who created you, O Jacob,
Who formed you, O Israel:
Fear not, for I will redeem you;
I have singled you out by name,
You are Mine.
2 When you pass through water,
I will be with you;
Through streams,
They shall not overwhelm you.
When you walk through fire,
You shall not be scorched;
Through flame,
It shall not burn you.
Haftorah Beam - Introduction
Happy New Year! We just finished the yearly cycle of Tishrei holidays. Beginning with the magestic Rosh Hashanah, then the intense Days of Awe which culminate in the fast of Yom Kippur. A quick break for building the Sukkah, and we were in the week-long autumn harvest festival of thanksgiving. The Sukkah has not yet come down, and we find ourselves once again in the sanctuary for Simchat Torah, this time dancing our hearts out with the Torah scrolls. And then.... routine returns, as we begin anew from Genesis -- the final beginning.
And with that, I have completed a year of Torah commentaries. So what's next?
In addition to a weekly reading of Torah, it is customary to read a chapter from one of the Prophets, which usually has a similar theme to that week's Parsha. This custom originated when the Jewish people were in exile and forbidden to read Torah. These alternate readings were substituted as a subversive practice. And then continued when it was no longer necessary. This year, I will write about these additional readings in the Haftorah Beam feature.
Why "Beam"? I like the double-meaning. I will try to illuminate these readings with a beam of light; and they are supporting and connecting beams that scaffold our understanding of Torah.
I am not very familiar with the Haftarot. This will be a real learning experience for me! Look for the first installment in the next few days.....
And with that, I have completed a year of Torah commentaries. So what's next?
In addition to a weekly reading of Torah, it is customary to read a chapter from one of the Prophets, which usually has a similar theme to that week's Parsha. This custom originated when the Jewish people were in exile and forbidden to read Torah. These alternate readings were substituted as a subversive practice. And then continued when it was no longer necessary. This year, I will write about these additional readings in the Haftorah Beam feature.
Why "Beam"? I like the double-meaning. I will try to illuminate these readings with a beam of light; and they are supporting and connecting beams that scaffold our understanding of Torah.
I am not very familiar with the Haftarot. This will be a real learning experience for me! Look for the first installment in the next few days.....
Thursday, September 26, 2013
Torah Connection 5773 - Index
5773
Bereishit - Genesis
Bereishit
Noach
Lech-lecha
Vayera
Chayei Sarah
Toldot
Vayetzei
VaYishlach
VaYeshev
Miketz
VaYigash
VaYechi
Shemot - Exodus
Shemot
VaEra
Bo
BeShalach
Yitro
Mishpatim
Tetzaveh
Ki Tissa
Vayakhel/Pekudei
Vayikra - Leviticus
Vayikra
Tzav
(Pesach)
Shemini
Tazria/Metzora
Achrei Mot/Kedoshim
Emor
Behar/Behukotai
Bamidbar - Numbers
Bamidbar
Nasso
BaHa'alotkha
Shlach-lecha
Korach
Chukat
Balak
Pinchas
Matot/Masei
Devarim - Deuteronomy
Devarim
VaEtkhanan
Eikev
Re'eh
Shoftim
Ki Teitze
Ki Tavo
Nitzavim/VaYeilech
Ha'azinu
V'Zot HaBracha
Khazak, khazak, va-nitkhazek!
Torah Connection - V'Zot HaBracha
Finally, the last parsha of the Torah, read on Simchat Torah, which begins tonight. This is Moses' final speech to the Children of Israel. His final prophecy, the words of a loving father on his deathbed, offering his blessings to each child. We can read each blessing and internalize its message as if it was directed to ourselves. Because, of course, it is.
Tonight is the Great Rewind. I suppose different congregations do it differently, but our congregation does it like this: Several dozen people line the perimeter of the sanctuary; the Torah scroll is carefully unfurled, and each person holds up a page of parchment; when the entire scroll is open, we start reading. Each person is prepared with a short summary of one parsha, and we basically go through a Cliff Notes rendition of the entire Torah. Finally, it is rolled back up.
Tomorrow morning, we read the final parsha.
Then, without missing a beat, we take the newly-rewound scroll, and read the first chapter of Bereshit (Genesis):
The last letter of the Torah is a Lamed, and the first letter is Bet. When those are concatenated, we get the word לב, which means "heart". Thus we fulfill the commandment in the blessing after the Shema,
And so the Tishrei marathon of holidays comes to an end, as well.
Tonight is the Great Rewind. I suppose different congregations do it differently, but our congregation does it like this: Several dozen people line the perimeter of the sanctuary; the Torah scroll is carefully unfurled, and each person holds up a page of parchment; when the entire scroll is open, we start reading. Each person is prepared with a short summary of one parsha, and we basically go through a Cliff Notes rendition of the entire Torah. Finally, it is rolled back up.
Tomorrow morning, we read the final parsha.
Then, without missing a beat, we take the newly-rewound scroll, and read the first chapter of Bereshit (Genesis):
The last letter of the Torah is a Lamed, and the first letter is Bet. When those are concatenated, we get the word לב, which means "heart". Thus we fulfill the commandment in the blessing after the Shema,
And so the Tishrei marathon of holidays comes to an end, as well.
And this one?
UPDATE!!!!
As I said yesterday, about 85% of children with special needs who find themselves in adult institutions in Eastern Europe die within a year of transfer.
"Brenton" is almost 16 years old. He has Down syndrome. He is in an institution in Ukraine.
Having escaped becoming a statistic all these years, he has just over a week before he "ages out" from being eligible for American international adoption. Some other countries permit international adoption until age 18 or even later, but for Americans, 16 is the cutoff.
"Brenton" is in the institution documented in the video below:
As you can see, there are some people working hard on making changes in this institution. But even in the best-case scenario, this is NOT where a young person should look forward to spending the rest of his life!
Julia Nalle has more information about "Brenton" here. I hope his family finds him soon!
As I said yesterday, about 85% of children with special needs who find themselves in adult institutions in Eastern Europe die within a year of transfer.
"Brenton" is almost 16 years old. He has Down syndrome. He is in an institution in Ukraine.
|
| Does he really look like a 15-year-old? |
Having escaped becoming a statistic all these years, he has just over a week before he "ages out" from being eligible for American international adoption. Some other countries permit international adoption until age 18 or even later, but for Americans, 16 is the cutoff.
"Brenton" is in the institution documented in the video below:
As you can see, there are some people working hard on making changes in this institution. But even in the best-case scenario, this is NOT where a young person should look forward to spending the rest of his life!
Julia Nalle has more information about "Brenton" here. I hope his family finds him soon!
Wednesday, September 25, 2013
It is still happening
Here in the US, orphanages were mostly phased out in the 1970's, as it was determined that foster care provides better opportunities for development in a more family-like environment. Foster care is far from perfect, of course, and many children passing through the system are severely traumatized by repeated reassignments, as well as outright abuse and neglect. It is, however, far superior to the alternative which it replaced.
In most of Eastern Europe, orphan care looks like this: Young babies and toddlers are placed in "Baby Houses", or orphanages for the pre-school set, where they live with their "groupa" and have basic needs met by orphanage staff. The staff may be caring or abusive, depending on the orphanage, but in most places the baby houses are more or less ok.
As they reach school age, healthy, typical children are transferred to an older-child orphanage ("internat"), where they go to school together with their groupa-mates. Children with disabilities (whether mental, physical, or medical), however, are usually transferred to an adult mental institution. Care at these places is usually far, far worse. Most American animal shelters are held to a higher standard than these institutions. Children are routinely underfed and denied medical attention. Many are drugged in order to keep them quiet, tied down to their cribs. Vulnerable and forgotten, they are frequently victimized, beaten and abused by the very people charged with their care.
Fully 85% of special-needs children transferred to adult mental institutions die within their first year there. "Kyle", whose chance to be adopted dropped to near-zero last year when Russia outlawed international adoption to Americans, has joined these statistics this week.
In most of Eastern Europe, orphan care looks like this: Young babies and toddlers are placed in "Baby Houses", or orphanages for the pre-school set, where they live with their "groupa" and have basic needs met by orphanage staff. The staff may be caring or abusive, depending on the orphanage, but in most places the baby houses are more or less ok.
 |
| "Kyle" as an adorable toddler with Down syndrome at a Russian baby house, 2 years ago. |
As they reach school age, healthy, typical children are transferred to an older-child orphanage ("internat"), where they go to school together with their groupa-mates. Children with disabilities (whether mental, physical, or medical), however, are usually transferred to an adult mental institution. Care at these places is usually far, far worse. Most American animal shelters are held to a higher standard than these institutions. Children are routinely underfed and denied medical attention. Many are drugged in order to keep them quiet, tied down to their cribs. Vulnerable and forgotten, they are frequently victimized, beaten and abused by the very people charged with their care.
 |
| "Kyle" shortly after transfer to a mental institution last year. |
Fully 85% of special-needs children transferred to adult mental institutions die within their first year there. "Kyle", whose chance to be adopted dropped to near-zero last year when Russia outlawed international adoption to Americans, has joined these statistics this week.
 |
| Baruch Dayan Emet, "Kyle" |
What is disability?
I am very nearsighted. Without glasses, I cannot drive safely, cannot read a blackboard even from the front row, and struggle with recognizing faces across a gym. In a world without glasses, I would be severely handicapped in all of these ordinary activities. I would probably have struggled to learn to read and write, which would impact my ability to access an education. This would manifest as a learning disability, perhaps even an intellectual delay.
What options would I have? I could find occupations which do not require good vision, I could live in an area well-served by public transportation, and I would probably lean heavily on family, friends and strangers to assist me in day-to-day activities. Many would think that I am a burden on society, since I require so much help, and yet can only perform low-level tasks. My family would probably advocate for me to be included, to be provided accommodations which would enable me to participate more fully, and for me to be appreciated for my strengths, not judged on the basis of my eyesight. And in a world without glasses, they would be right to do so!
Instead, what choices do I have in today's actual world? With glasses, I can participate in nearly all activities. With contact lenses, there is a vanishingly small number of activities where I would be limited. If I truly need full vision, I can shell out the big bucks for Lazik treatment. Or, I can choose to take my glasses off and use my extra-short focal length to look at things closely. It is all about having choices.
In the real world of disability we see a similar tension between seeking treatment and acceptance. Between trying to compensate for the disability and become "typical" and trying to change society to be more accepting of differences. There is a lot of fear that investing in research into treatment would undermine the struggle for acceptance. I think this is misguided. Research into treatment is all about giving people with disabilities the choices to control their own destiny. As a nearsighted person, I can decide what strategy makes the most sense for me. Many mildly nearsighted people choose to forgo glasses -- that is a legitimate choice! Even with my low level of vision, I usually prefer the comfort of going without glasses when I am swimming. I have other friends who invest in corrective goggles. Some deaf people are delighted to use cochlear implants, others prefer building up deaf culture to trying to fit in with hearing culture, and still others use hearing aids, which can be turned on or off depending on situation. It is all about choice!
With any disability for which there is no universally accepted treatment, a civil society will seek to make accommodations for affected individuals. A civil society will also research technologies which will give disabled individuals more options. It is not either/or, but and/also.
What options would I have? I could find occupations which do not require good vision, I could live in an area well-served by public transportation, and I would probably lean heavily on family, friends and strangers to assist me in day-to-day activities. Many would think that I am a burden on society, since I require so much help, and yet can only perform low-level tasks. My family would probably advocate for me to be included, to be provided accommodations which would enable me to participate more fully, and for me to be appreciated for my strengths, not judged on the basis of my eyesight. And in a world without glasses, they would be right to do so!
Instead, what choices do I have in today's actual world? With glasses, I can participate in nearly all activities. With contact lenses, there is a vanishingly small number of activities where I would be limited. If I truly need full vision, I can shell out the big bucks for Lazik treatment. Or, I can choose to take my glasses off and use my extra-short focal length to look at things closely. It is all about having choices.
In the real world of disability we see a similar tension between seeking treatment and acceptance. Between trying to compensate for the disability and become "typical" and trying to change society to be more accepting of differences. There is a lot of fear that investing in research into treatment would undermine the struggle for acceptance. I think this is misguided. Research into treatment is all about giving people with disabilities the choices to control their own destiny. As a nearsighted person, I can decide what strategy makes the most sense for me. Many mildly nearsighted people choose to forgo glasses -- that is a legitimate choice! Even with my low level of vision, I usually prefer the comfort of going without glasses when I am swimming. I have other friends who invest in corrective goggles. Some deaf people are delighted to use cochlear implants, others prefer building up deaf culture to trying to fit in with hearing culture, and still others use hearing aids, which can be turned on or off depending on situation. It is all about choice!
With any disability for which there is no universally accepted treatment, a civil society will seek to make accommodations for affected individuals. A civil society will also research technologies which will give disabled individuals more options. It is not either/or, but and/also.
Sunday, September 22, 2013
Why adoption matters
Most people think of adoption as just an alternative way to add another child to a family, and it is certainly that.
But there are times and situations when it can be a catalyst for many other ripples and effects.
It can raise awareness in the adopting family and community to the level of need, whether in domestic foster care or in foreign institutions and orphanages.
And it can bring hope to those foreign institutions and orphanages (and their societies) that the children who have been previously rejected can have a future where they are loved and cared for.
Julia and Rob Nalle adopted a boy with Arthrogryposis (a physical disability) three years ago. Here is their story about the ripples that their adoption has had so far.
But there are times and situations when it can be a catalyst for many other ripples and effects.
It can raise awareness in the adopting family and community to the level of need, whether in domestic foster care or in foreign institutions and orphanages.
And it can bring hope to those foreign institutions and orphanages (and their societies) that the children who have been previously rejected can have a future where they are loved and cared for.
Julia and Rob Nalle adopted a boy with Arthrogryposis (a physical disability) three years ago. Here is their story about the ripples that their adoption has had so far.
Saturday, September 21, 2013
Sukkot
After the intensity, heightened spirituality and inward reflection of the High Holidays -- the "Days of Awe" from Rosh Hashana to Yom Kippur -- Sukkot is a time of fragility, of connection to nature and family. Instead of congregating en masse in the great edifices of our communal sanctuaries, we build temporary structures barely big enough for a simple table and chairs, covered with a few symbolic branches for a roof over our heads.
It is a holiday for hospitality. The sukkah is intended to be always open for guests. We symbolically invite the Biblical patriarchs and prophets to join us, and the Lulav (Four Species) represents the full spectrum of people whom we should welcome to join us.
On Shabbat Sukkot, we read the book of Ecclesiastes -- a lyrical exposition on the fragility of life itself. As our rabbi said this morning, during the Days of Awe it seems that it is all about us: our sins, our repentance. On Sukkot we find that it is not all about us at all.
On Rosh Hashana and Yom Kippur we hear the mighty blasts of the Shofar. On Sukkot we just hear the rustling of the leaves. And it is enough.
It is a holiday for hospitality. The sukkah is intended to be always open for guests. We symbolically invite the Biblical patriarchs and prophets to join us, and the Lulav (Four Species) represents the full spectrum of people whom we should welcome to join us.
On Shabbat Sukkot, we read the book of Ecclesiastes -- a lyrical exposition on the fragility of life itself. As our rabbi said this morning, during the Days of Awe it seems that it is all about us: our sins, our repentance. On Sukkot we find that it is not all about us at all.
On Rosh Hashana and Yom Kippur we hear the mighty blasts of the Shofar. On Sukkot we just hear the rustling of the leaves. And it is enough.
Friday, September 20, 2013
Torah Connection - Yom Kippur
The parsha for Yom Kippur -- the Day of Atonement -- describes the ancient ritual of the scapegoat, which was the culmination of the Yom Kippur service during the Temple era. Two goats were selected, and one, at random, was sacrificed; while the other was set free. We re-enact this metaphorically in the modern service, when we pray the Unetaneh Tokef prayer, acknowledging our own mortality.
Thursday, September 19, 2013
More prenatal help for T21 fetuses
Ongoing research on ameliorating the effects of Trisomy 21, either by disabling the third copy of the chromosome in stem cells or by improving brain development with a post-natal injection of a specialized protein, has been rocking the Down syndrome community.
Now another avenue is showing some promise: Increasing maternal intake of the nutrient choline during pregnancy improves brain development and counteracts some of the delays experienced by individuals with T21. In fact, these researchers suggest that most women are not consuming adequate amounts of this nutrient, possibly to the detriment of typical babies, as well.
Now another avenue is showing some promise: Increasing maternal intake of the nutrient choline during pregnancy improves brain development and counteracts some of the delays experienced by individuals with T21. In fact, these researchers suggest that most women are not consuming adequate amounts of this nutrient, possibly to the detriment of typical babies, as well.
Demand for choline goes up dramatically during pregnancy, she explained. Choline is an essential nutrient for all individuals, but pregnant women have an even greater need due to the demands of the developing fetus. The most concentrated sources of choline are foods such as eggs and meats, but choline is found in many other foods, including vegetables such as broccoli and cauliflower, Strupp said.Whatever comes of this, I think it is positive that researchers are inspired to find ways to improve the quality of life for people born with Down syndrome, not just resorting to earlier detection and termination, as has been feared.
Monday, September 16, 2013
Tikva orphanage update - Please help!
Last year, I wrote an upbeat post about a Ukrainian orphanage for Jewish children, and contrasted it with the abysmal care offered in many state-run institutions. A Facebook friend shared this update with me:
In a Ukrainian Jewish orphanage, Tikva, economic downturn hits home
Apparently, the economic downturn has hit it hard, and they are in need of donations. Please help and share!
In a Ukrainian Jewish orphanage, Tikva, economic downturn hits home
Apparently, the economic downturn has hit it hard, and they are in need of donations. Please help and share!
Thursday, September 12, 2013
A pre-Yom Kippur meditation
Courtesy of Zeh Lazeh -- the Ruderman Family Foundation for Jewish disability advocacy.
How can we make our services more inclusive -- even if we think we are already doing so?
How can we make our services more inclusive -- even if we think we are already doing so?
Wednesday, September 11, 2013
A sad and happy day
I remember 9/11/01.
I dropped my 7-year-old off at school, and took the toddler and the baby to the store. There was muzak playing in the supermarket, and I took a leisurely time doing my shopping (as leisurely as one can get with a toddler and a baby...) On my way home my cellphone rang. It was my parents (who live in NYC). I tried to pick up but the line was dead. I tried to call back but couldn't.
I came home, and S____ said, "Get to a radio/tv right away." I did, but at that point they were covering the happenings at the Pentagon. It was all so confusing. I kept trying to reach my parents. I had no idea if they were OK. We did not know if there were any chemical or biological weapons involved (they live less than a mile from the WTC). After school, we had to deal with a confused 7-year-old as well. Eventually my parents were able to contact me and let me know that they were OK. All through the day we heard from friends who were ALMOST there, or who had other friends who were less lucky....
=================================
I remember 9/11/08.
I had been in pre-labor for several days, with my 4th child, the first child of my 2nd marriage. Finally, at 3am, we drove to the birth center and I was finally admitted. All through the night my husband helped me work through back labor. In the morning, the big kids came, with my mother and my best friend. Just before noon, he arrived, a healthy baby boy. He is looking forward to his strawberry/vanilla birthday cake. With an American flag on top.
I dropped my 7-year-old off at school, and took the toddler and the baby to the store. There was muzak playing in the supermarket, and I took a leisurely time doing my shopping (as leisurely as one can get with a toddler and a baby...) On my way home my cellphone rang. It was my parents (who live in NYC). I tried to pick up but the line was dead. I tried to call back but couldn't.
I came home, and S____ said, "Get to a radio/tv right away." I did, but at that point they were covering the happenings at the Pentagon. It was all so confusing. I kept trying to reach my parents. I had no idea if they were OK. We did not know if there were any chemical or biological weapons involved (they live less than a mile from the WTC). After school, we had to deal with a confused 7-year-old as well. Eventually my parents were able to contact me and let me know that they were OK. All through the day we heard from friends who were ALMOST there, or who had other friends who were less lucky....
=================================
I remember 9/11/08.
I had been in pre-labor for several days, with my 4th child, the first child of my 2nd marriage. Finally, at 3am, we drove to the birth center and I was finally admitted. All through the night my husband helped me work through back labor. In the morning, the big kids came, with my mother and my best friend. Just before noon, he arrived, a healthy baby boy. He is looking forward to his strawberry/vanilla birthday cake. With an American flag on top.
Sunday, September 8, 2013
Torah Connection - Ha'azinu (Shabbat Shuvah)
We are now full-swing in the Days of Awe -- the 10 days from Rosh Hashana to Yom Kippur. The sabbath which falls during this period is called "Shabbat Shuvah" -- the sabbath of return, which is also a play on the word "teshuvah" meaning repentance.
The reading -- parshat Ha'azinu -- is mostly a long poem recited by Moshe to the people of Israel. The title האזינו means "listen", but more specifically, "give your ear" ("ear" = אֹזֶן). The central proclamation in Judaism - the Shema - commands us to "hear". Interestingly enough, it is not the people who are commanded to "give ear" in this parsha:
G'mar khatimah tovah!
The reading -- parshat Ha'azinu -- is mostly a long poem recited by Moshe to the people of Israel. The title האזינו means "listen", but more specifically, "give your ear" ("ear" = אֹזֶן). The central proclamation in Judaism - the Shema - commands us to "hear". Interestingly enough, it is not the people who are commanded to "give ear" in this parsha:
1 Give ear, O heavens, let me speak;And yet, of course it is people to whom this oracle is directed. At the end of the parsha, he says,
Let the earth hear the words I utter!
2 May my discourse come down as the rain,
My speech distill as the dew,
Like showers on young growth,
Like droplets on the grass.
3 For the name of the Lord I proclaim;
Give glory to our God!
45 And when Moses finished reciting all these words to all Israel, 46 he said to them: Take to heart all the words with which I have warned you this day. Enjoin them upon your children, that they may observe faithfully all the terms of this Teaching. 47 For this is not a trifling thing for you: it is your very life; through it you shall long endure on the land that you are to possess upon crossing the Jordan.This week and a half is our time to focus on our very life. It is not a "trifling thing". It is not just an elaborate ritual and a tedious synagogue service. It is our very life.
G'mar khatimah tovah!
Ableism and Disableism Part 3: Down syndrome cure/treatment/research
Part of the tension between ableism and disableism rests on the distinction between fixing the disability and fixing the person. Or, which aspects of disability should be fixed in the disabled person, and which should be fixed in society's acceptance of disability. We see this in many disabilities: There is a significant segment of deaf culture which rejects cochlear implants, making the statement that deafness is not a problem. Likewise, increased wheelchair accessibility means that mobility-impaired individuals can get around. Do some seek prostheses in order to restore the ability to walk? Yes, but like cochlear implants, it is one option.
In the Down syndrome community, there is a similar tension. Do we seek every possible treatment and therapy in order to "normalize" children with T21, or do we instead seek to make society more accepting and accessible to them? With the new potential treatments/cures coming out of research laboratories, there is also the question of mucking around with people's personality in the name of such "normalization". Intellectual disability and its treatment involve changes to the brain, an incredibly complex organ where, in fact, our personality resides. We know with everything from ADHD to depression, psychoactive medications often have unpredictable side-effects.
I don't think it is really an "either/or". I think that it is great that cochlear implants are available. Many people's lives are greatly improved by them. It is also great that many people have the option to do without them, and nonetheless live full lives. It is great that the medical research community is looking to improve the lives of people with disabilities, and also that we work to make society more inclusive and accessible. In fact, I believe that those two trends, far from being opposite, actually catalyze each other. When people with disabilities are included, awareness of their needs rises, and researchers are inspired to address them. At the same time, as various means are available to overcome the disabilities, inclusion becomes easier.
When researchers find a way to improve brain development in pseudo-Down-syndrome mice, or use stem cells to selectively disable the 3rd copy of the 21st chromosome, they are generating new options for parents of children with Trisomy 21. Would all parents rush out to get these treatments when they become available? Of course not. Most people are NOT early adopters of new treatments. Some would, blazing the path for those who come after them, as we see which treatments actually improve outcomes. Also, some parents who would otherwise opt to abort based on a prenatal diagnosis of T21, would instead carry to term and access the new treatments.
Children with Down syndrome can access physical, occupational, and speech therapy. They can get medical and surgical treatment for heart defects and gastrointestinal issues. They can get vision and hearing aids, as well as specialized nutrition regimens. All of these are designed, in one way or another, to "normalize" them in ways which will make life easier. If the new treatments assist in this goal, I am sure that many parents would pursue them eagerly.
What do you think?
In the Down syndrome community, there is a similar tension. Do we seek every possible treatment and therapy in order to "normalize" children with T21, or do we instead seek to make society more accepting and accessible to them? With the new potential treatments/cures coming out of research laboratories, there is also the question of mucking around with people's personality in the name of such "normalization". Intellectual disability and its treatment involve changes to the brain, an incredibly complex organ where, in fact, our personality resides. We know with everything from ADHD to depression, psychoactive medications often have unpredictable side-effects.
I don't think it is really an "either/or". I think that it is great that cochlear implants are available. Many people's lives are greatly improved by them. It is also great that many people have the option to do without them, and nonetheless live full lives. It is great that the medical research community is looking to improve the lives of people with disabilities, and also that we work to make society more inclusive and accessible. In fact, I believe that those two trends, far from being opposite, actually catalyze each other. When people with disabilities are included, awareness of their needs rises, and researchers are inspired to address them. At the same time, as various means are available to overcome the disabilities, inclusion becomes easier.
When researchers find a way to improve brain development in pseudo-Down-syndrome mice, or use stem cells to selectively disable the 3rd copy of the 21st chromosome, they are generating new options for parents of children with Trisomy 21. Would all parents rush out to get these treatments when they become available? Of course not. Most people are NOT early adopters of new treatments. Some would, blazing the path for those who come after them, as we see which treatments actually improve outcomes. Also, some parents who would otherwise opt to abort based on a prenatal diagnosis of T21, would instead carry to term and access the new treatments.
Children with Down syndrome can access physical, occupational, and speech therapy. They can get medical and surgical treatment for heart defects and gastrointestinal issues. They can get vision and hearing aids, as well as specialized nutrition regimens. All of these are designed, in one way or another, to "normalize" them in ways which will make life easier. If the new treatments assist in this goal, I am sure that many parents would pursue them eagerly.
What do you think?
Thursday, September 5, 2013
Shana Tova!
Happy Jewish New Year!
According to the Jewish calendar, this is the year 5774. This, however, does NOT represent the age of the Universe, as is asserted by "young earth Creationists". The six days of creation are a different -- G*d's eye view -- time scale. It represents the time from when Adam and Eve ate the apple and left the Garden of Eden -- when people formed civilizations. When instead of living "in harmony with nature" we began shaping nature to our needs and desires. When we began to think about the afterlife and create organized religions. As the Torah readily documents, this has not been an easy history. In many ways, "primitive tribes" who still live as prehistoric people did have a less complex life. Not necessarily happier, but simpler (until, of course, we "discover" them.....) Seen that way, 5774 is definitely the right order of magnitude.
How appropriate to observe this anniversary with the solemn Days of Awe, when we reflect on where we have been and where we are going. 5774 years of struggling with ethics, both intrapersonal and interpersonal.
L'Shana Tova Tikhatemu
May you be inscribed for a good year.
According to the Jewish calendar, this is the year 5774. This, however, does NOT represent the age of the Universe, as is asserted by "young earth Creationists". The six days of creation are a different -- G*d's eye view -- time scale. It represents the time from when Adam and Eve ate the apple and left the Garden of Eden -- when people formed civilizations. When instead of living "in harmony with nature" we began shaping nature to our needs and desires. When we began to think about the afterlife and create organized religions. As the Torah readily documents, this has not been an easy history. In many ways, "primitive tribes" who still live as prehistoric people did have a less complex life. Not necessarily happier, but simpler (until, of course, we "discover" them.....) Seen that way, 5774 is definitely the right order of magnitude.
How appropriate to observe this anniversary with the solemn Days of Awe, when we reflect on where we have been and where we are going. 5774 years of struggling with ethics, both intrapersonal and interpersonal.
L'Shana Tova Tikhatemu
May you be inscribed for a good year.
Tuesday, September 3, 2013
Torah Connection - Nitzavim/Vayeilech
A few exceptional verses from this double parsha:
First, the opener:
"From the woodchopper to the waterdrawer"??? What kind of an occupational spectrum is that? Two physical laborers, what gamut do they span? Many theories have been proposed. I like the one that looks at the two occupations in the way that they interact with the earth. The woodchopper destroys nature, while the waterdrawer is in harmony with it.
"Uttermost parts of heaven"??? Many translations ignore this strange wording and substitute the more intuitive "ends of the earth". And yet, the original clearly says "heavens". This suggests, that if we lose our way in our spiritual quests, that G*d will nonetheless seek us out to bring us back to the correct path. As we approach the Days of Awe, this is an empowering sentiment.
Speaking of which, Rosh Hashana starts tomorrow night! I think I will make this, as recommended by my friend Miriam....
First, the opener:
"From the woodchopper to the waterdrawer"??? What kind of an occupational spectrum is that? Two physical laborers, what gamut do they span? Many theories have been proposed. I like the one that looks at the two occupations in the way that they interact with the earth. The woodchopper destroys nature, while the waterdrawer is in harmony with it.
| ד אִם-יִהְיֶה נִדַּחֲךָ, בִּקְצֵה הַשָּׁמָיִם--מִשָּׁם, יְקַבֶּצְךָ יְהוָה אֱלֹהֶיךָ, וּמִשָּׁם, יִקָּחֶךָ. | 4 If any of thine that are dispersed be in the uttermost parts of heaven, from thence will the LORD thy God gather thee, and from thence will He fetch thee. |
"Uttermost parts of heaven"??? Many translations ignore this strange wording and substitute the more intuitive "ends of the earth". And yet, the original clearly says "heavens". This suggests, that if we lose our way in our spiritual quests, that G*d will nonetheless seek us out to bring us back to the correct path. As we approach the Days of Awe, this is an empowering sentiment.
Speaking of which, Rosh Hashana starts tomorrow night! I think I will make this, as recommended by my friend Miriam....
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