Special needs adoption from a Jewish perspective.

Special needs adoption from a Jewish perspective.

Tuesday, December 31, 2013

Haftorah Beam - VaEra

The Haftorah reading for this parsha echoes the theme of punishment meted out to the Egyptians.  Lost in the gory details of punishment, however, is the underlying purpose:
25 Thus said the Lord God: When I have gathered the House of Israel from the peoples among which they have been dispersed, and have shown Myself holy through them in the sight of the nations, they shall settle on their own soil, which I gave to My servant Jacob, 26 and they shall dwell on it in security. They shall build houses and plant vineyards, and shall dwell on it in security, when I have meted out punishment to all those about them who despise them. And they shall know that I the Lord am their God.
The purpose of the punishment is to create security for the Jewish people to:

  1. gather in Israel to settle on their own soil;
  2. build houses;
  3. plant vineyards;
  4. know G*d.
The phrase "and [they] shall dwell on it in security" is repeated twice.  It is not enough to come to the Promised Land -- one must feel secure enough to build permanent homes, as well as do the long-range planning of agriculture.  Why vineyards?  There are two reasons.  First, we are told that the ultimate goal is to "know G*d" -- the vineyards are for the purpose of making the sacramental wine.  Beyond that, however, is the level of both security and comfort which must be achieved for people to afford the luxury of wine.  It is a non-essential food item, so the basics must already be covered.  But also, one must be pretty secure to permit oneself to be intoxicated, lest one's enemies take advantage of the compromised revelers.

This blog talks about adoption and special needs from a Jewish perspective.  I recently read a guest post on an adoption blog by an adult who was adopted at age 16.  She writes:
As a parent, you must provide a safe place for all of your children. This is your primary responsibility. This comes before making them productive citizens, helping them to adjust to your expectations, or feeling the same way about them that you feel about other children.
Before addressing the issues of productivity, expectations, and emotions, it is our job to provide our children with safety.  Without the battles with "Pharaoh", we will not be able to create the space for our children to "dwell in security".

Friday, December 27, 2013

Haftorah Beam - Shemot

Starting the second book of the Torah - Exodus - the Torah portion recaps the genealogy of the Hebrew tribes in Egypt as they transformed from a large clan to a nation.  There are 2 different Haftarot for this parsha, one favored by Ashkenazim, and the other by Sefardim.  The Ashkenazi selection focuses on the oppression and redemption of the Jewish people, while the Sefardi version focuses on the experience of the prophet tasked with leading the liberation.  I find the second more inspiring!

Like Moses in the Exodus story, the prophet Jeremiah protests his inadequacy, especially in the area of speech:
Ah, Lord God!
I don't know how to speak,

For I am still a boy.
and, in a reply which aptly echoes His words at the Burning Bush, G*d says,
Do not say, "I am still a boy,"
But go wherever I send you

And speak whatever I command you.

 Have no fear of them,
For I am with you to deliver you
He proceeds to outline the hardships and challenges which will befall the Jewish people as the two kingdoms separate and fall before their enemies.  However, G*d then repeats the call, promising His support in the face of all obstacles, as well as the eventual victory:
17 So you, gird up your loins, 
Arise and speak to them 

All that I command you.  

Do not break down before them, 

Lest I break you before them.

 I make you this day 
A fortified city, 

And an iron pillar, 

And bronze walls

Against the whole land — 

Against Judah's kings and officers, 

And against its priests and citizens.

 They will attack you, 
But they shall not overcome you; 

For I am with you — declares the Lord — to save you.
This time of year, the secular calendar offers us a chance to turn a new leaf.  Many people make New Year's Resolutions.  What obstacles seem insurmountable this year?  Which are worth tackling?  Which pursuits can we envision G*d challenging us to "gird up our loins" in, and pledging to be with us in battle?

Happy New Year!

Haftorah Beam - VaYechi

I'm so behind, it's distressing.  Some Haftarot are so inspiring, they just write themselves.  The Torah portion for this parsha was pretty fruitful last year.  I used it as an opportunity to connect to the Russian ban on international adoption by Americans.

The Haftorah, like the Torah portion, centers around a leader (David vs. Jacob) passing on his legacy.  It begins with a grand statement of the power of faith and tradition:

Chapter 21 When David's life was drawing to a close, he instructed his son Solomon as follows: 2 "I am going the way of all the earth; be strong and show yourself a man. 3Keep the charge of the LORD your God, walking in His ways and following His laws, His commandments, His rules, and His admonitions as recorded in the Teaching of Moses, in order that you may succeed in whatever you undertake and wherever you turn. 4 Then the LORD will fulfill the promise that He made concerning me: 'If your descendants are scrupulous in their conduct, and walk before Me faithfully, with all their heart and soul, your line on the throne of Israel shall never end!'
The rest of the passage, however, is a litany of allies and enemies, unfinished business that Solomon must take care of before he can be secure in his kingship.  David is extremely human in this passage.  I did not know what to do with this, until a recent holiday concert (where my husband's new barbershop quartet was one of the featured acts) included this famous tune, which really sums this up for me:

Wednesday, December 11, 2013

Seeing a need

Many adoption bloggers cite New Testament quotes to support their mission.  This one is no different. But the parts that I found most moving were those where she not only spoke from the heart, using her own words, but these words were universal in relevance:

In our large family, my kids hear me say all the time, "You see a need, you fill it. If you see something that needs doing, and you are able to, do it. If there is a pile of stuff at the bottom of the stairs waiting to go to the top, take the stuff with you when you go upstairs. If you are near the sink and a little person asks for a drink, fill his sippy cup. If you find an empty box in the pantry, throw it away." It's not a difficult concept, right? You see a need, you fill it. 
There is a child that has no one. I am someone. He can have me.
and finally,
If you have ever considered adoption, I want you to know, to really understand, that your child is worth it, too. Your child, the one that has not yet stolen your heart simply because you have not yet laid eyes on him or her, waits for you, perhaps in a country in which you have never landed. He's worth it, you know. She's worth it. Take a leap.

Haftorah Beam - VaYigash

This is my wedding anniversary parsha.  I really can't think of it as anything else.

The Haftorah is so appropriate for a wedding. We picked the wedding date based on our scheduling constraints, but the theme of both the Torah and Haftorah reading -- family reunification in the former, and national reunification in the latter -- is a great metaphor for the joining of the 2 families.

Thursday, December 5, 2013

Haftorah Beam - Shabbat Hanukkah

This past week's Torah portion was Parshat Miketz, but the usual Haftorah portion is substituted with a special reading for Hanukkah.

In this reading, the prophet Zechariah heralds the rebuilding of the Temple in Jerusalem, recounting a vision of the ordination of Joshua, the first High Priest who would serve in the Second Temple, as well as the grander vision of an age which shall be ruled, "Not by might, nor by power, but by My spirit — said the LORD of hosts."

This age is symbolized by the Hanukkah menorah -- the triumph of light over darkness, of a small band of believers against an empire dedicated to self-gratification:
Chapter 41 The angel who taked with me came back and woke me as a man is wakened from sleep. 2 He said to me, "What do you see?" And I answered, "I see a lampstand all of gold, with a bowl above it. The lamps on it are seven in number, and the lamps above it have seven pipes; 3 and by it are two olive trees, one on the right of the bowl and one on its left."
This theme is also reflected in the earlier section of the Haftorah reading, where Joshua is called forth to serve in the Temple:

Satan was seeking to incriminate Joshua, the first High Priest to serve in the Second Temple, because of the "soiled garments" (i.e. sins) he was wearing. G‑d himself defends the High Priest: "And the Lord said to Satan: The Lord shall rebuke you, O Satan; the Lord who chose Jerusalem shall rebuke you. Is [Joshua] not a brand plucked from fire?" I.e., how dare Satan prosecute an individual who endured the hardships of exile? "And He raised His voice and said to those standing before him, saying, 'Take the filthy garments off him.' And He said to him, 'See, I have removed your iniquity from you, and I have clad you with clean garments.'"
This expression, אוּד, מֻצָּל מֵאֵשׁ is an apt metaphor for oppressed and marginalized people, who are clothed in "filthy garments" - poverty, disability, discrimination and so on. Just as the Jewish people are "a brand plucked (literally, 'rescued') from the fire" throughout history, so we are called upon to see beyond Satan's "filthy garments" and rescue these brands from the fires of their oppression.

ז  מִי-אַתָּה הַר-הַגָּדוֹל לִפְנֵי זְרֻבָּבֶל, לְמִישֹׁר; וְהוֹצִיא, אֶת-הָאֶבֶן הָרֹאשָׁה--תְּשֻׁאוֹת, חֵן חֵן לָהּ. 7 Who art thou, O great mountain before Zerubbabel? Thou shalt become a plain; and he shall bring forth the top stone with shoutings of Grace, grace, unto it.' 


י  בַּיּוֹם הַהוּא, נְאֻם יְהוָה צְבָאוֹת, תִּקְרְאוּ, אִישׁ לְרֵעֵהוּ--אֶל-תַּחַת גֶּפֶן, וְאֶל-תַּחַת תְּאֵנָה.10 In that day, saith the LORD of hosts, shall ye call every man his neighbour under the vine and under the fig-tree.
Happy Hanukkah!

Tuesday, December 3, 2013


We spent Thanksgiving (and the first half of Hanukkah) with my in-laws at their new home.  It was lovely, and we miss not having them nearby anymore.  We did get to use the Menurkey:

We got the plaster version. It came plain like that, but we did paint it while we were there. I will edit this post when my darling husband sends me a picture of the painted final product.... (hint, hint....)

We were having so much fun feeding chickens and going Black Friday shopping (when you have teenage girls, you do that...) that I didn't get any blogging done.  Hope to catch up this week! (Egads, it's Tuesday already!)

Sunday, November 24, 2013

Haftorah Beam - VaYeshev

My commentary on the Torah portion for this week last year was not very inspiring.  The Haftorah, however, is much more fertile. (Hmm. perhaps, considering the sexual overtones of the Torah reading, that might not be the best word choice....)

The reading opens with a provocative accusation:

  כֹּה, אָמַר יְהוָה, עַל-שְׁלֹשָׁה פִּשְׁעֵי יִשְׂרָאֵל, וְעַל-אַרְבָּעָה לֹא אֲשִׁיבֶנּוּ:  עַל-מִכְרָם בַּכֶּסֶף צַדִּיק, וְאֶבְיוֹן בַּעֲבוּר נַעֲלָיִם.6 Thus saith the LORD: For three transgressions of Israel, yea, for four, I will not reverse it: because they sell the righteous for silver, and the needy for a pair of shoes;

The connection to the Torah reading is the parallel to the sale of Joseph to the Ishmaelite caravan by his brothers.  However,
RADAK  expands on this explanation by noting that in the context of the verse, "For three I would forgive, etc.," the meaning here is though the People of Israel violated the  three cardinal sins: sexual immorality, idol worship, and the shedding of blood, HaShem says that He would have forgiven them those sins.  But when they did "chamas,"  violence in a social context, taking violent advantage of the poor and perverting justice,  that was too much, even as it was at the time of the Generation of the Flood, where the text reads (Bereshit 6:11), "And the earth was corrupt before G-d and the earth was filled with violence."
In other words, "taking violent advantage of the poor and perverting justice" is worse than idolatry, adultery and murder, the three cardinal sins of Judaism.

The prophet Amos goes on to distinguish between the sins of other nations from the standard to which Israel is held accountable.  Chosenness comes at a price.  As the joke goes "Do You have to choose us every time?"  Jews are called upon to stand up for the downtrodden; the poor and the stranger, the orphan and the widow. Indeed, Tikkun Olam has a longstanding tradition in Judaism.  In every generation, even long after "official" prophesy had ceased to be recognized, there have been those to rebuke the nation, proclaiming,

ז  כִּי לֹא יַעֲשֶׂה אֲדֹנָי יְהוִה, דָּבָר, כִּי אִם-גָּלָה סוֹדוֹ, אֶל-עֲבָדָיו הַנְּבִיאִים.7 For the Lord G*D will do nothing, but He revealeth His counsel unto His servants the prophets.
ח  אַרְיֵה שָׁאָג, מִי לֹא יִירָא; אֲדֹנָי יְהוִה דִּבֶּר, מִי לֹא יִנָּבֵא.8 The lion hath roared, who will not fear? The Lord G*D hath spoken, who can but prophesy?

G*d does not act directly in the world -- without people taking action, the downtrodden will remain in their misery.  It is up to us to hear the lion roar. And once we have heard, "who can but prophesy?"

Saturday, November 23, 2013

The Power of Patience

I meant to post this last month but never got around to putting it together.  The inspiration came from an article in Harvard Magazine (which I get because I got my Ed.M. there 10 years ago...).  This article was written by an art professor about the value of taking time to appreciate a work of art.

During the past few years, I have begun to feel that I need to take a more active role in shaping the temporal experiences of the students in my courses; that in the process of designing a syllabus I need not only to select readings, choose topics, and organize the sequence of material, but also to engineer, in a conscientious and explicit way, the pace and tempo of the learning experiences. When will students work quickly? When slowly? When will they be expected to offer spontaneous responses, and when will they be expected to spend time in deeper contemplation?

I want to focus today on the slow end of this tempo spectrum, on creating opportunities for students to engage in deceleration, patience, and immersive attention. I would argue that these are the kind of practices that now most need to be actively engineered by faculty, because they simply are no longer available “in nature,” as it were. Every external pressure, social and technological, is pushing students in the other direction, toward immediacy, rapidity, and spontaneity—and against this other kind of opportunity. I want to give them the permission and the structures to slow down.
How did the professor approach this task?

Say a student wanted to explore the work popularly known as Boy with a Squirrel, painted in Boston in 1765 by the young artist John Singleton Copley. Before doing any research in books or online, the student would first be expected to go to the Museum of Fine Arts, where it hangs, and spend three full hours looking at the painting, noting down his or her evolving observations as well as the questions and speculations that arise from those observations. The time span is explicitly designed to seem excessive. Also crucial to the exercise is the museum or archive setting, which removes the student from his or her everyday surroundings and distractions.

At first many of the students resist being subjected to such a remedial exercise. How can there possibly be three hours’ worth of incident and information on this small surface? How can there possibly be three hours’ worth of things to see and think about in a single work of art? But after doing the assignment, students repeatedly tell me that they have been astonished by the potentials this process unlocked.
In a way, this echoed for me what I have read in many blogs about parenting a child with T21.  The slower development gives time for each milestone to be anticipated, relished, and savored.

Photograph ©2013 Museum of Fine Arts,
John Singleton Copley’s A Boy with a Flying Squirrel, 1765
It took me nine minutes to notice that the shape of the boy’s ear precisely echoes that of the ruff along the squirrel’s belly—and that Copley was making some kind of connection between the animal and the human body and the sensory capacities of each. It was 21 minutes before I registered the fact that the fingers holding the chain exactly span the diameter of the water glass beneath them. It took a good 45 minutes before I realized that the seemingly random folds and wrinkles in the background curtain are actually perfect copies of the shapes of the boy’s ear and eye, as if Copley had imagined those sensory organs distributing or imprinting themselves on the surface behind him. And so on.
Perhaps the "Developmental Delay" which so scares prospective and new parents of children with T21 is not a defect, but an opportunity.

Friday, November 22, 2013

Haftorah Beam - VaYishlach

Hmm.  Last year I was behind with Torah Connection, and this this year I am behind with Haftorah Beam for the same parsha.....

Unlike the Torah reading, which shows Esau's humanity alongside the fraternal struggle (and even his inner divine spark), the Haftorah reading focuses on the enmity between the descendants of the 2 brothers, which leaves little room for reconciliation:

17 But on Zion's mount a remnant shall survive,
And it shall be holy.
The House of Jacob shall dispossess
Those who dispossessed them.
18 The House of Jacob shall be fire,
And the House of Joseph flame,
And the House of Esau shall be straw;
They shall burn it and devour it,
And no survivor shall be left of the House of Esau
                      —for the Lord has spoken.
And it shall be holy.The House of Jacob shall dispossessThose who dispossessed them.18 The House of Jacob shall be fire,And the House of Joseph flame,And the House of Esau shall be straw;They shall burn it and devour it,And no survivor shall be left of the House of Esau                      —for the Lord has spoken.
 Not a happy note, but wait till next week's reading....

November is Adoption Awareness Month

A great blog post, interviewing 7 different adoptive moms.  Some from domestic foster care, some from overseas orphanages;  some at birth, some older; some with special needs, others just with an intense need for a loving family.


Wednesday, November 20, 2013


There is a stereotype in some of the popular literature of the adopted "monster child".  The child who becomes violent and destructive and destroys the family which has taken him/her in.  The child who seemed so innocent and lovable, but turned out to be a psychopath.

-But what if, what if, what if you adopt a kid and he turns out to be a big, RAD, monster kid?  What if he screams and tantrums and poops on the floor and hits me and the other kids and destroys our life?  What are we going to do? What are we going to do?

This stereotype is based on the experience of parents with Reactive Attachment Disorder (RAD). Adopted children have invariably gone through some kind of trauma -- or they would still be with their birth parents!  They need great stability in order to heal from this trauma.  In the process, they do much more testing of their parents than bio-kids -- who certainly do their share of parent-testing!  The more abuse, neglect, disrupted placements and other trauma these children have gone through, the harder it is for them to trust and attach.  This does not make them monsters.  It makes them hurt kids.  Parents need to be cognizant of their needs in order to address them.  Younger children in the home (if any) need to be protected.  Parents need to be psychologically prepared for the extreme testing and not take it personally.  This is all very hard.  But they are still just hurt children.  Just as if they were suffering from a physical injury and we would patiently help them regain function, so do RAD children suffer from emotional injury which requires lots and lots of patience and hard work to regain the emotional competency that most people take for granted.

-Monster kids are not real, so you shouldn't be afraid of them. But even if he does turn out to be a big, RAD monster kid, maybe he wouldn't destroy our life.  Maybe we would protect him and the other kids from his scary and scared feelings, and give him the kind of stability that he needs so badly, so that he would have the space to learn to give and receive love.
-Are you sure?
-Yes, I'm sure.

(adapted from Pookie and Tushka Find a Little Piano)

Friday, November 15, 2013

Who I Run 4

How exciting! A runner named Tim Boyle started this matching site (http://www.whoirun4.com) to connect people who like to run with people with disabilities and/or medical needs. They cheer each other on and share in their struggles and successes. I signed up about a month ago (http://matir-asurim.blogspot.com/2013/10/31-4-21-this-and-that.html) and I am still several weeks away from being matched.  But I keep seeing people that I know from the online disability community getting matched.  Will I be matched with someone I recognize?  Perhaps maybe with someone I actually already know IRL?  Or will it be someone new, a new connection to make?

Thursday, November 14, 2013


There is a stir in the Autism community.  One of the largest "Autism Advocacy" organizations, Autism Speaks, finds itself at odds with a large segment of the very community it purports to represent.  Countless autistics proclaim,

One of the main complaints about Autism Speaks is that it fails to actually include autistics in its leadership.  Much of the research and programs which it sponsors is informed by the perspectives of parents, teachers, and others in society.  For example, it is affiliated with the Judge Rotenberg Center, which has used questionable treatments (some would say torture) on autistics in an attempt to "cure" them.

Why is this happening now?

There seems to be a critical mass of adult autistics who have found ways to communicate, and are now advocating for themselves, where before it was left to parents, teachers, etc. to guess at their needs.  They report eloquently about the counterproductive and downright harmful practices to which they had been subjected.  Long assumed to be "lost in their own world", "lacking in empathy", or "mentally ret@rded", these self-advocates clarify that they are largely suffering from a sensory input overload.  They avoid eye contact, not because they are unable to connect with the other, but because such contact is unbearably intense. They self-stimulate (stim), sometimes to the point of injury, not because they are insensitive to the input, but in an attempt to deaden the overload to a manageable level.  Therapies which force them to maintain eye contact and keep "quiet hands" are therefore both emotionally abusive and undermine the subjects' coping mechanisms.

Of course, many autistics have not reached this point, and are still relying on others to speak for them.  And these others may or may not have the tools to facilitate this kind of development.  They may be relying on outdated information, or even desperately grasping for quack cures.  In spite of their best intentions and love for their autistic child, they unwittingly become part of the problem.

It seems as though autism is going through a similar evolution as Down syndrome and other disabilities.  Rather than a problem that we should want to disappear, it is an opportunity to understand another dimension of our own humanity.

Sunday, November 10, 2013

Haftorah Beam - Vayetzei

I think I did a really good job on this Torah portion last year -- please go back and read it!

The Haftorah portion has 2 different readings (from Hosea) for the Ashkenazi and Sephardi communities, but they overlap for 2 verses:
13 Then Jacob had to flee to the land of Aram;
There Israel served for a wife
For a wife he had to guard [sheep].
14 But when the Lord brought Israel up from Egypt,
It was through a prophet;
Through a prophet they were guarded.
Strange parallel!

  • In verse 13, Jacob (a.k.a. Israel) is fleeing from the land, while in verse 14 the people of Israel are returning to the land.  
  • In verse 13, Jacob/Israel is guarding sheep, while in verse 14 the people of Israel are themselves guarded.
  • That leaves the wife (Rachel) for whom Jacob guarded sheep in verse 13, and the prophet (Moses) who shepherded the Israelites in verse 14.  Neither of them is explicitly named in this passage.
I have spent a whole week agonizing over this.  I feel there has to be something there, but I am not identifying it. Maybe one of my 3 readers will help?

Wednesday, October 30, 2013

Haftorah Beam - Toldot

This week's Haftorah is a bit disturbing, from a special-needs perspective.  The prophet Malachi decries the people dishonoring G*d by offering "imperfect" animal sacrifices:
 7 You offer defiled food on My altar. But you ask, "How have we defiled You?" By saying, "The table of the Lord can be treated with scorn." 8 When you present a blind animal for sacrifice-it doesn't matter! When you present a lame or sick one-it doesn't matter! Just offer it to your governor: Will he accept you? Will he show you favor?-said the Lord of Hosts. 9 And now implore the favor of God! Will He be gracious to us? This is what you have done-will He accept any of you?
and again a bit later:
13 You say, "Oh, what a bother!" And so you degrade it-said the Lord of Hosts-and you bring the stolen, the lame, and the sick; and you offer such as an oblation. Will I accept it from you?-said the Lord.
14 A curse on the cheat who has an [unblemished] male in his flock, but for his vow sacrifices a blemished animal to the Lord! 
How does this square with a vision of universal divine love, and acceptance of all?  This passage is certainly more in line with the pagan notions of examining entrails of sacrificed animals.  How do we read this in a more elevated interpretation, consistent with modern sensibilities?

I struggled with this for a while, but then I looked back to the Torah portion. This is, after all, the story of Jacob and Esau competing for the birthright and their father's favor. Isaac directed Esau to "make him an offering" not unlike the ones offered to G*d in the Haftorah:
1 When Isaac was old and his eyes were too dim to see, he called his older son Esau and said to him, "My son." He answered, "Here I am." 2 And he said, "I am old now, and I do not know how soon I may die. 3 Take your gear, your quiver and bow, and go out into the open and hunt me some game. 4 Then prepare a dish for me such as I like, and bring it to me to eat, so that I may give you my innermost blessing before I die."
Jacob, at the direction of his mother Rebekah, brings a dish of prepared goat under the pretense of being Esau.  Although Isaac seems suspicious, he does in fact give Jacob the blessing intended for his brother.  This is but one in a string of deceptions which characterize Jacob's life.  Is he in fact the "cheat" referred to in verse 14 above?
14 A curse on the cheat who has an [unblemished] male in his flock, but for his vow sacrifices a blemished animal to the Lord!
Granted, there is no reference in the Torah reading to blemished animals.  However, Jacob's offering was clearly NOT what his father had requested!  If he wanted to usurp his brother's place, should he not have at least earned it by hunting down game as Esau was bidden to do?  At the very least, should he not have prepared the meal himself rather than have his mommy do it for him?! Certainly seems like the spirit of the cheater who takes the easy way out of fulfilling his duties.  And yet, he received his father's blessing.

The Haftorah asks several times, "Will such an offering be acceptable?"  This is presented as a rhetorical question, and yet, the very beginning of the reading states,
2 I have shown you love, said the Lord. But you ask, "How have You shown us love?" After all-declares the Lord-Esau is Jacob's brother; yet I have accepted Jacob 3 
G*d has already accepted Jacob's offering! In spite of all his faults, Jacob is beloved.  The answer to the seemingly rhetorical question is, surprisingly, YES.

The real question is not "Will G*d accept disabilities?" but.... Will we?

31 4 21 Impact

Ever wonder how a child with T21 might impact her siblings? This little boy not only learned how to be helpful without being suffocating when he plays with his sister, but was able to find his voice -- despite being naturally shy -- to explain her differences to other children.  Now the other children learn acceptance ("she is different, but normal and okay") but he has learned the strength one gains from being a stand for another.

Sunday, October 27, 2013

31 4 21 What is disability?

I just came upon this article by a physically disabled woman.  She bucks the trend of "people first language", insisting that she is NOT a "person with a disability":
The main argument in favor of the phrase “person with a disability” is that it’s “person first.” Whaaaat? No one has ever told me that I should describe myself as a “person with gayness” or a “person with womanliness.” I’m gay and I’m a woman -- no need to qualify that I’m a person too. But I have been told that I’m wrong for calling myself “disabled” rather than a “person with a disability.” 
However, unlike "gay" and "woman", she sees "disabled" as relative to society as opposed to an intrinsic aspect of her being:
Most people look at the word “disabled” and assume it means “less able.” It doesn’t. It means “prevented from functioning.” When I turn the wireless connection off on my computer, I get told that the connection has been “disabled”:imageDoes this mean that my wifi has suddenly become less able or broken? Has my wifi acquired a disability? Of course not. It has been prevented from functioning by an external force. In a very similar way to how I’m disabled by bus drivers that just won’t stop if they see me -- a wheelchair user -- waiting at the bus stop.
I find this a fascinating construction of the concept of disability, especially as it relates to my own writing on this subject.  How would Lisa's understanding of her own condition change if instead of creating "accessible environments" society responded by inventing step-climbing wheelchairs?

...and made them widely and cheaply available?

I imagine the result would be similar to nearsightedness, which is no longer truly considered a "disability".

What would it take to do this for people with T21?  To create not only accessible environments via inclusive educational opportunities, but to actually give them the tools with which they can function without disruptive impairment?

Many T21 spokespersons worry about this devaluing people with T21 and their unique perspectives and contributions.  I believe that creating technologies, whether mechanical or medical, which address the specific needs of the people themselves, is the best way of VALUING them.  Was the wheelchair in the video above invented by engineers who devalue people with mobility impairments?

Haftorah Beam - Chayei Sarah

The connection between the Torah reading and the Haftorah this week (well, last week....) is the theme of an elder leader planning for his succession.

In the Torah portion we see Abraham, returning from the trauma of the near-sacrifice of Isaac, as well as grieving for his beloved wife. He finds a suitable burying ground, buries Sarah, and sets about finding a wife for Isaac.

In the Haftorah we see King David on his deathbed, learning about the treachery of Adonijah, and scrambling to set the record straight, crowning his son Solomon within his own lifetime.

This reading lacks the poetry and deep meaning of some of the other Haftarot.  It is very matter-of-fact, and discusses King David's failings, both as a leader and as a man:
1 King David was now old, advanced in years; and though they covered him with bedclothes, he never felt warm. 2 His courtiers said to him, "Let a young virgin be sought for my lord the king, to wait upon Your Majesty and be his attendant; and let her lie in your bosom, and my lord the king will be warm." 3 So they looked for a beautiful girl throughout the territory of Israel. They found Abishag the Shunammite and brought her to the king. 4 The girl was exceedingly beautiful. She became the king's attendant and waited upon him; but the king was not intimate with her.
Where other Haftarot seem to take a theme from the Torah reading and develop it to a deeper level, this one seems to expose the harsh reality of imminent death and human frailty.

Thursday, October 24, 2013

Monday, October 21, 2013

31 4 21 Blog Hop!

I joined another 31 for 21 blog hop.
This one is all about ACCEPTANCE.  Acceptance of differences, not just special needs, but acceptance of each and all of us, with our individual strengths and weaknesses.

Sunday, October 20, 2013

31 4 21 Hey Jude

Hey Jude, don't make it bad

Sasha in Ukraine, 2013

Take a sad song and make it better

IMG_4536 (480x640)

Remember to let her into your heart

Temperance (2)

Then you can start to make it better

Benjamin 2 months home

Hey Jude, don't be afraid


You were made to go out and get her

30812173916 Blossom (3)

The minute you let her under your skin

Then you begin to make it better

And anytime you feel the pain, hey Jude, refrain
Don't carry the world upon your shoulders
For well you know that it's a fool who plays it cool
By making his world a little colder

Friday, October 18, 2013

31 4 21 Another link

Since I am still behind, I will happily link to Confessions of the Chromosomally Enhanced, whose author is both a sibling of a person with T21 and adopted her first child intentionally with T21 as well "The Dual Divas". Great compilation of links on a variety of issues.

Oh, and this one, too.

Thursday, October 17, 2013

31 4 21 This and that

I'm falling behind on 31-for-21, so I figured I'll just cop out and link to a few other blogs....

Some T21 cuteness....

Some advocacy....

Some angst about awareness vs. acceptance.....

And a new facebook group I just joined, to motivate me to run more, AND advocate at the same time!

Wednesday, October 16, 2013

31 4 21 Buddy Walk pics!

Sorry I'm a few days late...  We had a great time at the Buddy Walk on Sunday!

We met Rachel Coleman of Signing Time:

We met some new bloggy friends:

And walked:

...and walked....

...and walked:

All in all, several thousand walkers participated, raising about half a million dollars for educational and medical services, research, and advocacy.

Monday, October 14, 2013

Haftorah Beam - Vayera

In my Torah Connection on this last year, I focused on the story of Sodom and Gomorrah.  But the Haftorah links to the other major theme in this week's parsha -- the binding of Isaac.

Actually, there are 2 parallel stories of near child-death in this parsha.

First, Abraham sends away his firstborn son, Ishmael, and Ishmael's mother Hagar.  Wandering in the desert, the young boy nearly perishes of thirst until Hagar prays to G*d, who shows her the way to a spring of water so the two of them revive themselves and receive G*d's blessings.

Then, the famous story of the Akeidah, where Abraham himself takes Isaac up Mount Moriah, binds him on an altar, and prepares to sacrifice him before an angel of G*d intervenes to save Isaac and a ram is substituted.

Now, to the Haftorah.

Here, too, are 2 parallel stories.  The first one is a short story which seems to connect both to the Hagar story and, interestingly enough, to Hanukkah, which is coming up next month:
1 A certain woman, the wife of one of the disciples of the prophets, cried out to Elisha: "Your servant my husband is dead, and you know how your servant revered the Lord. And now a creditor is coming to seize my two children as slaves." 2 Elisha said to her, "What can I do for you? Tell me, what have you in the house?" She replied, "Your maidservant has nothing at all in the house, except a jug of oil." 3 "Go," he said, "and borrow vessels outside, from all your neighbors, empty vessels, as many as you can. 4 Then go in and shut the door behind you and your children, and pour [oil] into all those vessels, removing each one as it is filled."
5 She went away and shut the door behind her and her children. They kept bringing [vessels] to her and she kept pouring. 6 When the vessels were full, she said to her son, "Bring me another vessel." He answered her, "There are no more vessels"; and the oil stopped. 7 She came and told the man of God, and he said, "Go sell the oil and pay your debt, and you and your children can live on the rest."

The parallel theme is that the resources we need to save our children are right there, and we just need to (a) pray, (b) open our eyes, and (c) be a little resourceful in order to make use of them.  This is a valuable lesson to remember when we commemorate the Hanukkah miracle of the sufficient jug of oil (which, coincidentally, falls on Thanksgiving this year!).

The second story in fact parallels the Isaac story, and is quite a bit longer.  Like Sarah, the Shunnamite woman in this story is elderly and barren.  Like Sarah, she offers hospitality to a stranger who promises her a baby boy one year hence. Like Sarah, she assumes he is mocking her, and yet his prophecy is fulfilled.

The child grows, and we learn,
18 The child grew up. One day, he went out to his father among the reapers. 19 [Suddenly] he cried to his father, "Oh, my head, my head!" He said to a servant, "Carry him to his mother." 20 He picked him up and brought him to his mother. And the child sat on her lap until noon; and he died.
Where in the Isaac story we read in great detail the father's (Abraham's) point of view, here we see a different perspective.  The child went to his father, and suddenly suffered an unidentified trauma to his head. Did he have a stroke or other medical injury? Was he struck by a weapon? or perhaps, by a farm implement? Did he have an accident? We do not know. The father delegates one of his servants to take the boy to his mother, who holds him till noon, and he dies.  At this point, we see the mother's reaction:
21 She took him up and laid him on the bed of the man of God, and left him and closed the door. 22 Then she called to her husband: "Please, send me one of the servants and one of the she-asses, so I can hurry to the man of God and back." 23 But he said, "Why are you going to him today? It is neither new moon nor sabbath." She answered, "It's all right."
She does not tell her husband what happened, but she puts the dead boy in the prophet's bedroom and calls upon her husband to get her a donkey so she may go fetch the prophet.  We see her negotiating with the prophet and his servant, doing whatever it takes to bring the boy back to life.  She shows perfect faith and level-headedness as she does this, putting on a face of "everything's ok" to everyone until she speaks to the prophet himself. She recognizes that the G*d who gave her this child would be perfectly capable of reviving him, and she places her trust in this.  How does the husband feel about all this?  We do not know.

What did Sarah do when Abraham went to the mountain with Isaac?  We do not know.  The Torah is silent on this.  Some commentators take a guess based on the observation that after the Akeidah, neither Sarah nor Isaac ever speaks to Abraham again.  In fact, the very next chapter Sarah herself dies.

The Akeidah is one of the most disturbing passages in the Torah, read each year on Yom Kippur when we see ourselves in both the role of Abraham and Isaac.  But where is Sarah is the story?  What is her role?  Do we, in fact, have to wait for this Haftorah many centuries later to redeem her? And why are these men so callous?  Don't they love their sons as much as the mothers do? Surely that is not the message we should take from these passages!

And yet, from Abraham's point of view,
9 Sarah saw the son whom Hagar the Egyptian had borne to Abraham playing. 10 She said to Abraham, "Cast out that slave-woman and her son, for the son of that slave shall not share in the inheritance with my son Isaac." 11 The matter distressed Abraham greatly, for it concerned a son of his. 
Here we see Sarah as self-centered, concerned about Isaac at the expense of Abraham's other child.  Abraham is clearly trying to balance the needs of the whole family, and he is "greatly distressed" about it.  Incredibly, G*d directs him to disregard these concerns, and to listen to Sarah instead:
12 But God said to Abraham, "Do not be distressed over the boy or your slave; whatever Sarah tells you, do as she says, for it is through Isaac that offspring shall be continued for you. 13 As for the son of the slave-woman, I will make a nation of him, too, for he is your seed."
The Torah is mostly written from a masculine point of view, and yet it is clear that there is more going on here.  Did Sarah know what Abraham was up to with Isaac? If she suspected, the what did she say to him? If she said something, would G*d have told him to heed her, as He had with respect to Ishmael? Was the Akeidah preventable?  Should it have been, or was it necessary for the spiritual development of the Jewish people? Also, what does this say about what the woman ought to do?  Should she speak up, or defer to her husband? How does the Haftorah answer these questions?

Clearly I'm reading all this as a woman......

Thursday, October 10, 2013

31 4 21 Beautiful

Just after coming across this lovely post on Our Cora Bean, which references this photo montage, this video appeared in my facebook feed:

Haftorah Beam - Lech L'cha

How providential that this week's parsha is Lech L'cha -- "Go forth (to yourself)" -- as we get ready for the Buddy Walk.  The Torah portion is about Abraham walking the walk -- literally and figuratively -- that will change the world and the way that humanity understands the spiritual realm.  Buddy Walks are about walking the walk -- literally and figuratively -- to change the way that humanity understands those who are "different".

The Haftorah reading clearly echoes this theme:
27 Why do you say, O Jacob,
Why declare, O Israel,
"My way is hid from the Lord,

My cause is ignored by my God"?
28 Do you not know?
Have you not heard?
The Lord is God from of old,
Creator of the earth from end to end,
He never grows faint or weary,
His wisdom cannot be fathomed.
29 He gives strength to the weary,
Fresh vigor to the spent.
30 Youths may grow faint and weary,
And young men stumble and fall;
31 But they who trust in the Lord shall renew their strength
As eagles grow new plumes:
They shall run and not grow weary,
They shall march and not grow faint.

Actually, I struggled to take an excerpt out of this.  It is all SO GOOD.

Wednesday, October 9, 2013

31 4 21 Buddy Walk this Sunday!

The Massachusetts Down Syndrome Congress will be running the 17th annual Buddy Walk this Sunday.  Why do they have to do it on Columbus Day weekend?  I'm trying to recruit people to walk with us, and everybody is going away for the weekend!  It's not fair!  Waaaaahhhhh!!!!

Anyway, if you want to sponsor me, please click here.

Monday, October 7, 2013

Haftorah Beam - Rosh Hodesh

I'm a bit late posting Haftorah Beam this week, because while I was expecting to write about Parshat Noach, when I attended Shabbat services on Saturday morning I found out that it is Shabbat Rosh Hodesh (new moon)!  Which means, a special Haftorah!

Mostly, the link to the new moon appears in one verse:
23 And new moon after new moon, 
And sabbath after sabbath,
All flesh shall come to worship Me
— said the Lord —
However, the reading begins with an extensive exhortation to pay heed to the spirit, as well as the letter of the Law:
1 Thus said the Lord:
The heaven is My throne
And the earth is My footstool:

Where could you build a house for Me,
What place could serve as My abode?
2 All this was made by My hand,
And thus it all came into being
— declares the Lord —
Yet to such a one I look:
To the poor and brokenhearted,
Who is concerned about My word.
3 As for those who slaughter oxen and slay humans,
Who sacrifice sheep and immolate dogs,
Who present as oblation the blood of swine,
Who offer incense and worship false gods —
Just as they have chosen their ways
And take pleasure in their abominations,
4 So I will choose to mock them,
To bring on them the very thing they dread.
For I called and none responded,
I spoke and none paid heed.
They did what I deem evil
And chose what I do not want.

This is important because the New Moon was a relatively important occasion in Biblical times.  It was important to inform all communities about the New Moon so that holidays will be properly celebrated at the same time.  Isaiah here points out that it is not sufficient to bring fancy sacrifices -- one must match his ethical behavior to G*dly standards, as well.

Haftorah Beam - Noach

The second parsha in the Torah recounts the famous story of Noah's Ark, as well as the slightly less famous story of the Tower of Babel.

The Haftorah reading echoes the Flood theme:

7 For a little while I forsook you,
But with vast love I will bring you back.
8 In slight anger, for a moment,
I hid My face from you;
But with kindness everlasting
I will take you back in love
— said the Lord your Redeemer.
9 For this to Me is like the waters of Noah:
As I swore that the waters of Noah
Nevermore would flood the earth,
So I swear that I will not
Be angry with you or rebuke you.
10 For the mountains may move
And the hills be shaken,
But my loyalty shall never move from you,
Nor My covenant of friendship be shaken
— said the Lord, who takes you back in love.
This reading uses the Flood and the Ark as a metaphor for G*d's forgiveness and redemption after a time of crisis and despondency. Some congregations end at this point, while others continue on with elaborate descriptions of the rather material delights offered to those who follow Torah:
12 I will make your battlements of rubies,
Your gates of precious stones,
The whole encircling wall of gems.
13 And all your children shall be disciples of the Lord,
And great shall be the happiness of your children;
14 You shall be established through righteousness.
You shall be safe from oppression,
And shall have no fear;
From ruin, and it shall not come near you.
This echoes the motivations of the Tower builders, who said, "Come, let us build us a city, and a tower with its top in the sky, to make a name for ourselves; else we shall be scattered all over the world."  It is through Torah and righteousness that we can reach the Heavens, make a name for ourselves, and live unafraid.  The Tower builders sought closeness to G*d, honor, and security.  But they went about it the wrong way.  The Haftorah answers them (and us) with the correct way to achieve all of these aims.

Sunday, October 6, 2013

31 4 21 A Sonnet

What deserves protection, love, and care?
And what do we reject and cast aside?
In building a society that’s fair
Do differences unite us or divide?

The prejudice that poisons our minds
Builds prisons, metaphorical and real
Where lives are lost or squandered to our blinds
Are we, or they, more difficult to heal?

For gender, race or disability
Our preconceptions must be ripped apart
We’ll build a world of Possibility
And give our children’s world a better heart

It isn’t easy now, nor ever was
To herald Love and Justice in one’s Cause

Saturday, October 5, 2013

31 4 21 Heaven on Earth

On the way to the park, my 5-year-old said, "We can touch the sky!"

I asked, "How can we do that? Isn't the sky too high?"

And he answered, "No, because we are on the Earth."

I thought about this, and understood that he is realizing that the atmosphere comes all the way down to the ground.  So of course, the "sky" begins right here where we are.

So if you think about it like that, there is no distinction between saying, "G*d is in Heaven" or "G*d is all around us".  It's the same thing!  Heaven begins right here on Earth.

About a month ago, we read in Deuteronomy,

יא  כִּי הַמִּצְוָה הַזֹּאת, אֲשֶׁר אָנֹכִי מְצַוְּךָ הַיּוֹם--לֹא-נִפְלֵאת הִוא מִמְּךָ, וְלֹא רְחֹקָה הִוא.11 For this commandment which I command thee this day, it is not too hard for thee, neither is it far off.
יב  לֹא בַשָּׁמַיִם, הִוא:  לֵאמֹר, מִי יַעֲלֶה-לָּנוּ הַשָּׁמַיְמָה וְיִקָּחֶהָ לָּנוּ, וְיַשְׁמִעֵנוּ אֹתָהּ, וְנַעֲשֶׂנָּה.12 It is not in heaven, that thou shouldest say: 'Who shall go up for us to heaven, and bring it unto us, and make us to hear it, that we may do it?'
יג  וְלֹא-מֵעֵבֶר לַיָּם, הִוא:  לֵאמֹר, מִי יַעֲבָר-לָנוּ אֶל-עֵבֶר הַיָּם וְיִקָּחֶהָ לָּנוּ, וְיַשְׁמִעֵנוּ אֹתָהּ, וְנַעֲשֶׂנָּה.13 Neither is it beyond the sea, that thou shouldest say: 'Who shall go over the sea for us, and bring it unto us, and make us to hear it, that we may do it?'
יד  כִּי-קָרוֹב אֵלֶיךָ הַדָּבָר, מְאֹד:  בְּפִיךָ וּבִלְבָבְךָ, לַעֲשֹׂתוֹ. 14 But the word is very nigh unto thee, in thy mouth, and in thy heart, that thou mayest do it.

Spirituality is not distant, esoteric, or distinct from our earthly existence.  It is a contiguous part of it, just as the air we breathe -- in our mouths and in our hearts.

Friday, October 4, 2013

31 4 21 Expectations and happiness

These two stories intersect in my mind:

Spoiled Generation Y kids are unhappy.   This unhappiness may be traced to unrealistic expectations, inflated notions of their own talents, and exaggerated images of their peers' success on social media.

Many adoptions fail, and with inadequate resources, some adoptive parents resort to unethical channels to "re-home" (a.k.a. disrupt) their adopted children.  While this is clearly wrong, the real question to ask is what are the factors which lead to the failed adoptions in the first place.  To some extent, corrupt adoption agencies may be culpable, offering inadequate pre-adoption training and post-adoption support to families which may be overwhelmed by the needs of their new child(ren).  Many Christian organizations also encourage ill-advised practices such as adopting out of birth order and adopting multiple unrelated children, seeing adoption as an absolute good regardless of context.  Such adoptions can certainly work, but they require even greater preparation, resources, and support.

At the same time, it seems that part of this trend is traceable to similar factors as the unhappiness of Generation Y. A quick search of the internet yields countless adoption blogs.  Families present this as a wonderful process, often glossing over the difficulties.  Disrupting families rarely express themselves openly around these sensitive issues.  The result is that adopters have unrealistically high expectations of their child(ren)'s transition, and a muted awareness of the potential pitfalls.  When they run into any kind of difficulties, they may give up, feeling inadequate.  They are likely to think that they are to blame for the problems, or that these problems are far worse than average, since their image of what the adoption "ought" to look like is far rosier, and other adopters appear more competent.

The advice most often offered by successful, experienced adopters is compatible with this analysis.  They consistently urge potential adopters to keep expectations extremely low.   They also encourage parents to seek support, both within the adoption community and in other arenas (family, friends, faith communities, professional counseling, etc.).

Reformtalk.net is a watchdog website that highlights potentially problematic practices in adoption.  It is highly critical of the adoption industry, which sometimes sets parents up for failure, as well as government agencies responsible for the welfare of children.  They provide a list of red flags, which represent potential risks in a given adoption situation.  None of them necessarily has to be a showstopper, but are important to keep in mind in assessing a course of action.

Adoption is not unique in this regard.  Many young women have a similarly idealized image of babies, prompting them to get pregnant without adequate preparation.  In most cases, though, they spend their pregnancy preparing and adjusting their expectations.  They also have mentors (mothers, aunts, older friends) who can support them through the hard times.  As a result, most mothers learn to mother their babies effectively.  With adoption, these resources are less available, since there are fewer potential mentors in the community.  They are there, but they need to be actively sought out.

Thursday, October 3, 2013

31 4 21 Future face of Down syndrome

An excellent piece over at Patheos, interviewing Faycal Guedj, a Tufts University/University of Paris geneticist who also has a sister with Trisomy 21.   To a large extent, this echoes and amplifies what I wrote about disability a few weeks ago.  New research offers more choices for individuals to determine how to best improve their own (or their child's) quality of life.

Most interesting, I thought, was the commentary on a little-discussed effect on early prenatal testing (non-invasive prenatal testing, or NIPT) .  Many in the Down syndrome community worry about the projected increase in T21-related terminations.  However, Dr. Guedj points out that,
An early diagnosis of trisomy 21 with NIPT (10 weeks of gestation) offers a tremendous opportunity to intervene in utero using safe and well-designed therapeutic strategies that will potentially lead to a very significant, which is not to say a complete, normalization of brain development and cognitive outcome in newborns and children affected with DS.
....as well as cardiac and thymic development, as he explains later.

In other words, more research, more treatments, and more attention will translate into both higher quality of life for individuals and more acceptance for differences.  As with nearsightedness, more options empower individuals to make the choices that are right for them, which ultimately reduces, not increases, the stigma. It is not either/or, but and/also.

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