JDAM - What is inclusion?

In the 70's and 80's, the buzzword was "mainstreaming".  Children with disabilities would be placed in "mainstream" classes instead of in isolated "SPED" rooms.  In the 90's and 00's, awareness developed that mainstreaming is not enough -- we must not simply place children with diverse needs among their peers, but they must be actively included in order to have their needs met.  A new alphabet soup was created, from IEP's (Individual Education Plans) to FAPE (Free Appropriate Public Education) and LRE (Least Restrictive Environment), schools grapple with how to serve all children, both academically and socially.

As this mother points out, however, true inclusion is not about procedure, but about expectations.  If a student is seen as deficient, through the lens of a diagnosis, no service or classroom environment will allow him or her to thrive. "Presuming competence" is the key to enabling all students to set, meet, and exceed high levels of performance in all areas.

Jewish tradition has a mixed record on this.  On the one hand, the Jewish emphasis on education creates an environment where all children are held to high expectations.  On the other hand, children who struggle with traditional educational frameworks suffer feelings of shame and failure.  Religious education often lags behind secular education in providing appropriate differentiation for different learning styles.  Creating true inclusion for all, children and adults with all abilities, is a challenge for our communities today.

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February is Jewish Disability Awareness Month!

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Happy blogging!

Calling out ableism

In the course of conversations, I occasionally get the opportunity to call out examples of casual able-ism.  Usually, when this happens, the other person will apologize and move on.  Yay!

In a recent conversation on Facebook, however, I came across someone who described a public personality as:

I just think he doesn't care one way or the other. He goes with whatever way the wind blows. Frankly, I think he is somewhere on the spectrum.

To which I responded:

Why did you use "on the spectrum" as a slur..?

The response showed a lack of understanding as to what I meant:

I didn't. I used it quite seriously. He seems disconnected. His affect is off. Galit, I am disturbed you drew the wrong conclusion about me.

So I explained:

Autism and ASD are not equivalent to apathy ("I just think he doesn't care one way or the other.") Nor do people on the spectrum typically "go with whatever way the wind blows."

Now the other person got really upset:

Galit, you know nothing about me and you are making slurs against ME. Go away.

Whoa!  Did I say anything that warranted that?  Did I say anything about the person I was conversing with?  Well, I tried to calm things down:

 I didn't claim to know anything about you, nor did I slur you. I do know something about autism. I understand that you might have made the statement you did out of a common misconception about the nature of autism. I am sorry if I touched a raw nerve for you with my comments. There is much prejudice around disability, even today, and I try to point it out when I see it come up in casual conversation. I don't want to hijack the thread, that's not what it is about. Peace.

Alas, peace was not to be had:

Galit, you lectured me. You made assumptions about me. And you are still doing so. Please go away.

==========================

Was I off base?  What do you think was going on?
(Obviously, I did not persist at this point, as any further attempts seemed pointless.)

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?

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.'

and

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!

Autism

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.

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”:Does 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?

31 4 21 Down syndrome off the clock

This is a few years old, but I just saw it now.  It's a great way to understand acceptance of disability!

http://davehingsburger.blogspot.com/2010/07/down-syndrome-off-clock.html

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?

A good person

Ableism.... We value abilities. In ourselves, in our children, in our civilization.  We take pride in accomplishment, in reaching new heights.

As I have discussed last week, this is true even for people with disabilities. Parents of developmentally delayed children gush about how much more intensely milestones are celebrated in proportion to the struggle to achieve them. We hail the trailblazers who accomplish great things in spite of disabilities and hardships.

But at some point in raising our children, usually when they are one-upping each other, we take them aside and tell them that it is more important to be good than smart/strong/first/etc.  It is more important to show each other grace, compassion and kindness than to "win" this or that contest.

Do we really mean that?

How often are people truly able to value the good person over the successful person?  As a spouse?  As a friend?

How often do we, by our very attitude, undermine that sentiment to our own children, when we emphasize measurable accomplishments while taking good behavior for granted or handing out only muted praise?  How often do we ourselves model grace and compassion to our children?

Do we really mean that?

Next week is Rosh Hashanah.  The ten Days of Awe will culminate in Yom Kippur, the Day of Atonement. It is traditionally a time of soul searching, seeking to repair our relationships both with G*d and with our fellow man. Let us examine what we truly value, both in others and in ourselves.

Let us recalibrate our yardstick by which we measure personal worth.

Ableism and Disableism Part 2

I realize that in my previous post, I talked about ableism, but what is dis-ableism?

There seem to be two contradictory streams in disability advocacy.  One says (as I pointed out last time),

Never mind what these children cannot do -- look at all they CAN do!

While the other says,

It's not about ability at all!  They have value as individuals even if they can do nothing at all!

Which camp you are in affects which treatments you will pursue, which educational opportunities you will endorse, and in general color every aspect of your advocacy.

Of course, the two statements are not necessarily contradictory: People have value as individuals, and should STILL be celebrated for their accomplishments.  People should be treated as equals, AND be given the opportunity to develop their abilities, whatever those are.  As I said in the comments, I am severely nearsighted.  I would NOT want society to "value" my disability by refusing to treat it.  Technology -- from simple eyeglasses to laser surgery -- has made it possible for my disability to be fully mainstreamed.  There are very rare occasions when it gets in my way.  Yesterday I did some tubing with my daughter, so I had to leave my glasses behind. I was dependent on her to recognize the motorboat driver.  That is not a disability "because society defines it as such" -- it is something very useful that I was not able to do for myself.  I imagine that it is similar with most disabilities: They can be compensated for by increased dependence on others in society, either individually or collectively.  And certainly, dependence on others is preferable to isolation -- if I could not find the motorboat driver, I would have missed the ride! Society should absolutely work on inclusion and valuing all individuals regardless of ability.  But valuing individuals with disabilities is NOT THE SAME as valuing the disabilities themselves.  Options should be offered for people with disabilities to ameliorate them, just as options are available for nearsightedness.  Not all people would choose them. There are some people with mild vision problems who choose not to use corrective technologies.  But that is an individual choice.  Likewise, society should strive to give people with other disabilities options for overcoming those disabilities.  These may well include societal changes, but most people benefit from actual treatment, as well. Refusing to treat disability under the guise of "valuing" it is what I think of as dis-ableism.

Part of this feeds into the value we assign to "diversity". What does diversity mean?  I don't really think that people are truly capable of "celebrating diversity", nor would it necessarily be good if we did.  Diversity refers to a collection of "others". In an inclusive society, we see each other's common humanity first, and the differences as minor. But that means that the commonality is what is valued. We find the differences interesting, but not crucial. However, even in a closed society, there are many differences which are discounted. In both cases, it is not the "other" which is celebrated! It is just different characteristics which are "othered".  Basically, a community that values diversity maximizes that which it sees as common, and minimizes that which is seen as "other".  But that which is seen as "other" is still shunned, not celebrated (e.g. a Republican at most Liberal colleges....)  If we see people with disabilities as "other", then ableism is a justification for discrimination.  However, if we see them as "same" as anyone else, then ableism can spur research and development of technologies and therapies that expand the options available to people who would otherwise be dependent on others (individually or collectively) to function equally in society.

People with disabilities are CAPABLE!

Their ABILITIES are worth celebrating!

Look at all that our kids CAN DO!

Ableism and Disableism

I struggle with the concept of ableism.

On the one hand, it is clear that people with disabilities should be valued as people, and not denied inclusion in society because of their disabilities.

At the same time, denying that disability is inherently worse than ability seems counterproductive.

All people have strengths and weaknesses.  Our weaknesses can hold us back if we don't find ways to either address them or work around them.  They pose challenges for us.  In a very real sense, our weaknesses are disabilities, even if we are considered able-bodied. In this sense, there are many disabilities within the "typical" spectrum:

• Nearsightedness
• Lisp
• Tone-deafness
• Bad manners
• Poor time management
• Disorganization
• Chronic halitosis
• Innumeracy
• Obesity
• Bad temper
• Poor integrity
• Addiction

I have personally had about half of these at some point or another in my life. For some I required medical or therapeutic assistance, others I struggled to overcome on my own, and others I have learned to live with, either making allowances for myself, or dealing with the consequences of my own shortcomings.  Society, for its part, makes some accommodations for some of these (e.g. providing "tip-tables" to compensate for people's innumeracy), but in every case, I have been happier with the results when I was able to overcome/compensate for my disabilities myself rather than relying on others to do so.

Those are the options before people with recognized disabilities, as well.  For example, a mobility handicap can be compensated for with wheelchairs, but only if society provides fairly universal accessibility.  If the possibility exists to enable a mobility-impaired person to walk, that would clearly expand that person's options: S/he can hike off-road, participate in sports, and not be stuck if the elevator is broken.  Seeking societal accommodation and acceptance does not preclude fixing the impairment! Offering a cure or treatment increases people's options, even as we work towards greater inclusion.  A few generations ago, a nearsighted student would need a seat at the front of the class.  Today, eyeglass use is nearly universally available in developed countries, allowing nearsighted people to participate equally in nearly all activities.

Ability is valuable even in the context of disability, and disability advocacy: "Never mind what our children cannot do, look at all that they CAN do!" is certainly a celebration of ability, not disability, even as the people themselves are celebrated.  Nobody actually celebrates disability itself, although we frequently celebrate strengths which were developed in response to the disability.

We also instinctively admire those with "extra" ability.  We fantasize about superheroes.  We admire the accomplishments of Olympic athletes and Nobel laureates.  For that matter, we greatly admire wheelchair marathoners and college graduates with Down syndrome.

Ableism is bad when it leads to de-humanization of people with disabilities.  It can be a positive force for achieving full equality and inclusion when it motivates both scientific and societal mechanisms for restoring abilities to those who would otherwise be dependent on the accommodations of others.