Presume Competence

This article is well on the way to becoming viral.  The vision of what's possible when we presume competence is glorious in its brilliance.  Read the article.  Support the vision.  Go.

This image startled me when I read the article a second time:


100 years ago, all of the individuals in this picture would be ineligible to benefit from a college education, whether due to gender, race, or disability.  All would be considered inferior, incompetent, undeserving.

How much richer our world is when we presume competence.

JDAM - Driving in snow

New England is experiencing record snowfall this month, topping 100 inches.  As I write, the blizzard is raging outside, dumping an additional foot plus on top of the several feet already on the ground from the last 4 or 5 storms within a few weeks.

In a recent Facebook conversation about our collective Post Traumatic Snow Disorder, a friend was extolling the virtues of snow tires.  I responded:

 I like driving in snow. Without snow tires. It forces me to actually slow down, and fully let go of any notion of hurry. I slow at yellow lights, let others go first at intersections, and stop for the trudging pedestrians making their way through the snow banks. It becomes almost Zen-like. I think that people driving SUV's with snow tires at full normal speed are making things more dangerous for others.

Yesterday, as I was driving in an inch or two of slippery stuff, it occurred to me that this description is similar to the way many parents of developmentally delayed children describe their parenting journey.  Slowing down and ignoring other people's timetables can be liberating.  The joy these parents describe in celebrating their children's milestones -- whenever they are reached -- is not unlike the inner peace I experience when my car whispers along the winter wonderland, knowing that the safety I create for myself and my passengers by slowing down also creates a safe place for other vehicles and pedestrians.

It reminds me that when I am driving my "SUV's with snow tires" -- my oh-so-brilliant children (dare I say, "special snowflakes"..?) -- that I should likewise take the time to both enjoy the journey and make sure that my passage in the world is a positive experience for others, as well.

#JDAMblogs

JDAM - Bat Mitzvah Inclusion

Although the details are not specified in the article, I am pretty sure that this is a kid in my congregation:

http://www.kveller.com/what-i-learned-while-planning-a-bat-mitzvah-for-my-daughter-with-disabilities/

There is certainly much more to do, but it is good to see earnest effort and collaboration to make such progress happen.

#JDAMblogs

Context

We experience our life in a certain context.  The current turmoil over the Ferguson, MO events is occurring in a context where

• Black people are more likely to be targeted by police because of racial profiling; but also
• Black people are more likely to be involved in a crime because of the social impact of fatherlessness, poverty, poor educational opportunities and drugs

and also where

• Police are in the front lines of dealing with the fallout from a broken society; but also
• Police are over-militarized and under-trained; and
• Police are bringing their own baggage to situations, which can easily escalate

In other words, the events which led to the death of Michael Brown are in the context of a long chain of events, where neither he nor Darren Wilson are either fully innocent or fully guilty.  It is society itself which must do the work of healing both racial injustice (both from within and without) and police brutality.

==========

Disability prejudice, likewise, exists in a societal context which devalues those who are seen to fall short.

This morning I followed this link, posted by the mother of a little girl with Down syndrome.  It is the story of a (different) mother who has just given birth after years of infertility treatments, several miscarriages, and the loss of newborn twins.  While most of the comments expressed congratulations for the birth and sympathy for the earlier losses, some were judgmental:

And not to be snarky, but what's wrong with adoption? Why do people feel such a strong need to have a biological child? If you have problems with fertility, maybe you should consider taking an unwanted child? Why go through all the heartache and expense, not to mention what it did to your body? Seems a little weird to me, that's all.

To which someone responded that this couple had in fact considered adoption, and linked to an earlier post, here.  Curious, I read this as well.  Turns out that their idea of adoption was the conventional desire for a "healthy newborn that looks like us," which generally involves a long, long wait and/or high expense (even while pouring both money and time into IVF).  As a young couple, it is reasonable for them to be hesitant about older-child adoption.  However, when I read this:

We decided that we were okay with certain physical problems (cleft lip/palate, blindness or deafness, missing limbs) but not others (Cerebral Palsy, etc). We also decided we are not okay with mental disabilities (Down’s Syndrome, Fetal Alcohol Syndrome, etc). Sound selfish? Sure. We get that a lot, even from our closest friends and family. Of course we know that there are lots of older/special needs kids who need homes, and of course we know that those children are harder to place than healthy newborns. That doesn’t mean that taking an older and/or special needs kid is right for our family. Right now, our family needs a healthy baby. An older and/or special needs kid needs things that we just can’t provide.

I could not help but wonder about the thought process.  They had already dealt with extreme prematurity, in term of the twins they had lost.  The risk of brain damage and consequent Cerebral Palsy is very high in premature infants, and yet they persisted in pursuing high-risk pregnancies.  If they cannot provide "things" that a special needs kid needs, what would they have done if they had given birth to one?  For that matter, what if their beautiful, perfect baby is diagnosed next month with a special need that was not detected in utero?  What if she is in an accident that leaves her disabled?  What if she turns out to be autistic?   There are no guarantees. Could they "provide" for their child then?

That said, I am not judging her, nor would I post this as a comment on her page.  Her decision process was, as I said above, conventional.  It took place in the context of prevailing social attitudes about disability.  Social attitudes which are demonstrated by parents "grieving the diagnosis," whether it comes pre- or post-natally.  Where expectant parents smile and say "as long as it's healthy," without considering the implication of that statement for a baby who fails to meet that standard.

It is society which must change.  Just as we seek to create a society where individuals are not devalued on the basis of their race, we also should create a society where all children are valued, not judged as deficient according to arbitrary standards before they take their first breath.

Are you with me?

Inspiration

Many in the disability community complain about their lives being seen as an "exhibit" for the purpose of inspiring others.  And yet, many people with disabilities do in fact live inspiring lives -- even if the inspirational element has more to do with overcoming societal prejudice than the disability itself.

Here is an excellent analysis of this issue.

Another Jewish special needs website!

http://www.matankids.org/

31 for 21 - "disability", again

And again, another article pointing out that "disability" is a social construct.  We all have strengths and weaknesses, and some of those get labeled a "disability" while others do not.  Which weaknesses are socially stigmatized is dependent on the social context.  A few hundred years ago, my severe nearsightedness would have been a debilitating disability, since effective optometry was not generally available.  At the same time, "learning disabilities" did not really exist, since there was not a universal expectation of literacy and schooling.  Someone who did not function well in an academic environment simply pursued other endeavors which were better suited to his/her strengths.

31 for 21 - Summer Camp Inclusion

Many Jewish organizations have been slow to take up the cause of special needs inclusion, especially intellectual/developmental special needs.  Jewish culture places a high value on intellectual achievement, and seems to regard intellectual disability as a failing, either on the part of the child, or his/her parents. 

As this article points out in the introduction, this is antithetical to Jewish liturgy.  Moses himself had a speech impediment, and needed Aaron's assistance to take his prophetic message to the Pharaoh, as well as to the Jewish people.  If anything, this is a model of inclusion at work: Moses was provided with the necessary accommodations which allowed his leadership to shine.

As a counselor at the Jewish summer camp Camp Ramah, the author of the article discovered that sharing each camper's challenges was empowering for all, as both typical and disabled campers realized that we are not defined or limited by our challenges.  This echoes the insight that the mom in yesterday's post made when talking with her children.  We all have our unique strengths and challenges.  Society arbitrarily labels some of these "disabilities", but these are artificial constructs, not facts of reality.  The reality, which we aspire to see reflected in society, is that our value is in our common humanity and in the way we treat each other.

31 for 21 - Talking with children

Children have very few prejudices (not having had a chance to learn too many yet), and have no filter or guile about those prejudices which they have absorbed.  In talking with children, we can learn what we have inadvertently taught them, for good or bad.  Such conversations are excellent mirrors to hold up to ourselves.  Perhaps we think nothing of using foul language, until we hear it echoed from the mouths of our offspring. Or we don't realize ways in which we stereotype others, until our filter-free kiddos say something that makes us cringe.  Conversely, how lovely it is when our children think it completely natural to speak politely, offer sincere compliments, and share freely, because this is the behavior they see modeled in the home.

http://abcnews.go.com/Lifestyle/learn-kids-talking-disability/story?id=26480369

31 for 21 - person-first language

http://thesqueakywheelchair.blogspot.com/2014/10/i-know-im-person-thanks-for-reminder.html

31 for 21 - discrimination

Looks like this year, my participation in 31 for 21 will mostly be limited to linking to other bloggers....  Here is a piece by my friend Jisun, examining the real-life consequences -- in some cases, life-and-death consequences -- of "othering" people with disabilities.  In any situation where we try to justify treating people with disabilities differently, would we use the same logic to justify racial or gender discrimination?

So about those Russian kids....

Nearly 2 years ago, Russia abruptly terminated international adoption to the United States, as well as expelled American NGO's working in orphanages.  Many families who were already in process were prevented from completing their adoptions, leaving behind children whom they had already met.   Russia's Children's Ombudsman promised that all these children will be well taken care of domestically, including the numerous children with special needs.

Seems that, ahem, more work needs to be done....

http://www.reformtalk.net/2014/09/17/russia-children-with-disabilities-face-violence-and-neglect/

Bloggy Blog Hop!

My friend Hevel took time between ducking rocket attacks to participate in this blog hop about writing, and he invited me to hop on.  So here I am!  Like him, I am tagging 4 people instead of 3 to increase the chances of the blog hop continuing.

1 – What am I writing or working on?

I have been writing this blog for the last 2+ years, spanning topics from disability rights, to orphanage conditions and adoption stories, to exploring issues in Judaism and modern politics.  Outside of the blog I am starting a coffeeshop as a social enterprise to create opportunities and inclusion for people with disabilities. Please support!

2 – How does my work differ from others of its genre?

There are many adoption bloggers.  Nearly all of them are Christian.  There are many special needs bloggers, some of whom are Jewish, although most are not focused primarily on the Jewish angle on things.  And there are some Jewish-themed blogs.  I started this blog specifically in order to provide a Jewish voice on disability, on adoption, and... anything else.  

3 – Why do I write what I write?

I explain my original motivations here.  At this point, I also use my blog as a platform to promote Power Cafe!, as well as to explore Jewish liturgy and philosophy.

4 – How does my writing process work?

I consciously write a feature about some part of Jewish liturgy throughout my blog.  This gives me something to write about even when I am feeling blocked, and helps maintain the focus of the blog.   I started with the Shema, continued with Pirkei Avot (Ethics of the Fathers), then the Amidah.  Last year I blogged each week about the weekly Torah reading, and this year I am nearly done doing the same thing with the Haftorah reading.  What will next year bring?

Now, in true IceBucketChallenge form, I challenge the following 4 bloggers to continue the hop..... Or dunk their heads in a bucket of ice water!

Jisun blogs at Kimchi Latkes, mostly about family (including an adorable boy with an extra chromosome) and related issues.

Ellen blogs at Love that Max, and hosts a regular blog linkup every weekend. Max is an awesome boy who loves cars and want to be a firefighter.  

Dave blogs at Rolling Around in my Head.  He is a passionate advocate for all marginalized people.  He has written about disability, race and sexual orientation, to name a few.  And he even fits some of these categories.

Lisa blogs at Jewish Special Needs Education, and provides an interesting take from a professional angle.  She says: "I helped to build an inclusive synagogue school from the ground up and I firmly believe that everyone has a right to learn & feel connected to his/her heritage. I consult with faith organizations to offer professional support & expertise in developing inclusive practices and programs. Each one of us is created b'tzelem elohim, in God's image, so let's do what we can to act like it!"  Here is her entry.

Down syndrome stereotype

People with Down syndrome are often seen as "happy, loving, and sweet".  As anybody who knows actual people with Down syndrome, they have a full range of emotions and dispositions.  So where does the stereotype come from?

My husband suggested the following hypothesis:
Because children with Down syndrome are disproportionately aborted (or, in some cultures, institutionalized), the parents who choose to keep and raise these children are probably endowed with greater compassion and kindness than average.  And this parenting translates into children that grow up to be compassionate, kind people, regardless of genetics.

This is not a complete explanation.  Children with other disabilities are also vulnerable to abortion and abandonment, and yet children with spina bifida, blindness, or physical deformity do not have this reputation.  I think there is a feedback loop, though.  Children with Down syndrome have characteristics which elicit a different kind of parenting.  And this parenting does seem to encourage the stereotype.

Power Cafe!

I have been out of the blogging loop for the past few weeks because I have been ramping up to unveiling my latest project.  I'm starting a coffee shop!   Rather than just talk about disability rights, and bemoan the lack of opportunity for people with special needs, I decided to do something about it, and put my money where my mouth is.  Power Cafe! will be a coffee shop in the Boston area (location TBD) which will be staffed and run entirely by people with disabilities.  I am working to put all the pieces together, and if all works out, we could open as soon as September or October.

Is this exciting or what?!  Please help make this a reality by contributing to my IndieGoGo campaign, and share with your friends on social media, too!

Thanks so much!!!!

"High-Functioning"

In discussing this post, I was asked "She is very high-functioning, isn't she?"  I kind of evaded the question, since "functioning" labels are falling out of favor in the disability community.  I tried to address it on the level of multiple intelligences, which have also come to replace a linear view of IQ for neurotypical populations.  That didn't really go anywhere.  I finally said "I don't know her, I don't KNOW what she is like beyond what her mom is writing here."  But that wasn't satisfying either.

The simple answer is "Yes, she is high-functioning."

However, that simple answer is wrong.   It is precisely the point of the post that the designation of "functioning" is predicated on how said functioning is both supported and assessed.  Ascribing the label to the person him/herself assumes that it is a static quantity independent of context.  Many autistic individuals present as extremely "low-functioning" until they sit down with a keyboard and express themselves, and are able to create for themselves an environment which allows them to function.  Likewise, many people with Down syndrome present very differently when therapy, education, and community inclusion allow them to participate fully in society.  The child in the above post was written off by various teachers and therapists at different times, only to blossom when the appropriate supports were made available. In many cases, labeling someone as "low-functioning" is an excuse for not providing these kinds of supports.  Conversely, labeling someone as "high-functioning" is used to exclude them from exemplifying the benefits of supports. (E.g. "Sure, she is able to access the curriculum -- she is high-functioning!")

This is precisely what makes the field of cognitive disability so exciting -- we really DON'T KNOW what "functioning level" is to be "expected" of any given individual -- no matter how disabled they currently appear to be.  People are shattering one glass ceiling after another when appropriate supports are established.  All we can do is treat each person as an individual and work to create inclusive contexts so that everyone is able to "function".

The teenaged baby

Yesterday, I was blocked on a blog.

The blogger, a very popular figure in the special-needs adoption community, posted this video of her adopted daughter:

The girl in the video is one of the survivors of the Pleven orphanage in Bulgaria. When she came home last year, she was severely malnourished, "literally at death's doorstep." She was 14 years old, and weighed 14 lbs.  The Salems have done amazing work in rehabilitating her, supporting her transition to good nutrition, and showering her with love and nurturing.  This video is, in fact, a testament to her physical and emotional healing.

Why, then, was I blocked?

My objectionable comment (which, I grant, allowed room for misunderstanding), was: "I know she is severely delayed, but isn't it still inappropriate to tickle a teenaged girl's chest?"

I need to clarify again, that I do not believe that there is any untoward intent on the part of the dad in the video. He sees her as a baby, and treats her as one. My question is not about his intent, but about her personhood. How do we differentiate between the ways in which seeing her as a baby is appropriate, and those in which it is not?

This video brings into focus a question which comes up not only in the adoption community, but in the larger disability community as well.  To what extent do developmental delays warrant infantile treatment, and at which point should people -- even those who are severely delayed and limited -- be accorded more mature treatment?

This is seen in recent stories where young adults with Down syndrome have sought to get married.  In a recent story (which I will link to when I find it...) a couple with Down syndrome had a symbolic wedding, only to go back to their respective group homes, since neither one offered them the possibility of living together as a married couple.  Similarly, an adult woman with Down syndrome sued her own parents for the right to determine her own living arrangement.  Frequently, such individuals are confronted with the objection, that since they are developmentally delayed, they should be treated as minors, according to a medically-determined "developmental age" which may be anywhere between 6 and 12 years old.  Our society is slowly learning that "developmental age" is not so clear-cut.

This video appears to me to show a similar problem.  This girl is developmentally a baby.  She does not walk or talk, and her understanding of her surroundings is extremely limited.  However, with the good nutrition she is now receiving, her body will probably go into puberty mode soon.  It is possible that it is already doing so.  What is appropriate in relating to an individual whose body might be ready to respond sexually, but the rest of whose development is still in infancy?  Clearly they need to touch her to bathe and diaper her, but that is routinely done with adults in medical settings, with clear understanding as to what is and is not inappropriate touching.  A child like Hasya in this video, however, presents like a baby, which is why the commenters were aghast that I would see anything questionable about this tickling. Perhaps they are right, and Hasya has not yet reached the point that body boundaries are appropriate.  The question still stands:  How do we decide? Where is that line?

Here, in contrast, is a video put out by a charity working to bring specialized therapists to Ukrainian orphanages and institutions:


Notice that the caretaker is tickling "Natasha" on her belly and armpits, but avoiding her chest entirely.

One might say that I have no business commenting on this, since I do not have a severely delayed, post-institutionalized child at home.  I do, however, have 3 daughters, and I know that with each of them, we established body boundaries several years before any outward manifestation of puberty appeared.  I know that tickling, say, an 8-year-old girl on her chest like that would feel very wrong.

Finally, one of the other commenters wrote:

Hehe I can just hear her saying "Papa, stooooop" while trying to catch her breath between giggles!! SO precious!! 

At which point, for a severely delayed child, does No start to mean No?

Reelabilities Festival

Began in Boston tonight!

Two Little Girls

Two little girls are recovering from life-saving surgery today.  The first, 4-year-old Lyla Spitz, had open heart surgery just last week.  She has Down syndrome, and is also missing her left hand.  When she was adopted from a Urkrainian orphanage last year, her prognosis was very poor.  In fact, her adoption was delayed several times because it was believed that she would not survive the trip home.  Over the course of the past year, several specialists at different hospitals shook their heads at her condition, concluding that she was not healthy enough to undergo surgery, that the surgery required was too complicated, and/or that she would not survive the recovery.

Well, as I wrote in the last post, little Lyla sure proved them wrong!  The specialists at Boston Children's Hospital figured out how to do the surgery, and within a few days she was moved out of the ICU, and was up and walking around.  Here she is, smiling and dancing as the Healing Harmony Quartet is serenading her:

Isn't my husband adorable?  (Well, so is Lyla...)

While we were with Lyla, my WhoIRun4 buddy, 3-year-old Sianni was undergoing surgery for her neurofibromatosis tumors in Virginia.  The surgery was successful, and she is now in recovery, too.

Wishing full recovery to both of these lovely little girls!

Fear of disability

3 links:

This one has been making the rounds;

and this one is a response to it.

And this is a reality check, about what's actually scary.