Author: stevekuusisto

So you dream of a day when disabled writers, artists, mechanics, parents, neighbors, young and old are customary at any event, in any space. You dream of this because it’s not only the proper dream for your temperament, or because of Jeffersonian values, or because you were once a girl scout, but because frankly, it’s a human vision, the most inclusive ever imagined, for disability intersects race, gender, ethnicity, sexual orientation, and all the manifold future shocks of epi-genetics. You dream of this because you went to college in the late sixties and early seventies when there was a burgeoning awareness of institutional complicity framing and supporting injustice. You read Herbert Marcuse and underlined: “The truth of art lies in its power to break the monopoly of established reality to define what is real.”

The national conference of the Associated Writing Programs or AWP in the year 2016 failed to include any disability literature among its hundreds of literary panels and presentations. Imagine had they failed to include any gay, lesbian, bi-sexual, trans-sexual, queer, gender fluid presentations, or a single panel devoted to writing by people of color or women? The outcry would be considerable, but not so with disability—a matter I consider shocking, not because able bodied people can’t conceive of disablement as a profound and universal element of human life, but because, (and here I shall echo Marcuse) there is no truth in art that does not break the monopoly of established reality). Gay reality is crippled reality; black reality is crippled reality; feminist reality—you get the picture.

So why does the national conference of the creative writing programs in higher education “not” get disability as an artistic seed bed, and perhaps the most inclusive of all marginalized categories, insofar as nearly everyone will have a disability at some point in this life? Why indeed. The answer lies in a paternalistic view of physical difference, a 1970’s model of the disabled as outliers who probably cost lots of money to include at the university; who must have a “special” office to handle their requests for whatever moist and inconvenient things they need. The rest of us able bodied professors fairly shiver at the prospects. These people have breathing tubes, motorized scooters, talk funny, or don’t talk at all. They have colostomy bags and crutches and sometimes they have wigs. They bring “down” the youthful, peppy, yoga-centric, aerobically charged, glossy entitlement of diversity filtered through the optics of good looks and vitality. Why a couple of years ago at their conference in Seattle, they hosted a poet with a disability who said publicly she’s not interested in that identity—would prefer to be understood as a real poet.

You see how it works? Real literature is GQ and Vanity Fair; it’s happy; and we all know those disabled writers can’t be happy—why in fact, disability is so hard, most of us university sponsored, middle class creative writer types imagine if we’re ever going to be disabled, well, by God! we shall commit physician assisted suicide! Do I gild the lily? Am I stuffing the owl? Perhaps. But leaving disability out of the conference, and then, pretending to afford something like awareness by hastily creating a “disability caucus” where the disenfranchised crippled writers can meet, and maybe even express their concerns, well, this is a kind of Uncle Tom business. When I hear separatism I know it for what it is.

Now having said these things, and having said them previously, and in turn, having vowed on my own part to never attend the AWP again so long as it’s both clumsy with its provision of accommodations for those who need them, and dismissive of disability as a literary culture, one every bit as good as the cultures of other alterities, I must also say that I’ve taken some hits. One disabled writer accused me of privilege, as in “having it” because I have a university teaching job and I’ve published a few books, some having received minor acclaim. My disapprobation with the AWP and its cynical “caucus” (insert here, “after the horse has left the barn we will give you a stall…” has cost me a good deal. Yes I have a job, and some books to my credit. But does anyone imagine that boycotting a conference that celebrates American writing is good for my spirit, my friendships, my own “networking” (whatever that may mean)?

Of course it’s not good for me. And it’s not good to be seen as a crank. (That hoary able bodied trope for the cripples, after all.) And it’s not good that my friends who aren’t disabled and who are right now scarfing down canapés and drinking merlot in Los Angeles aren’t talking about this scandalous culturally exclusive matter. That they don’t talk about it has everything to do with the Club Med dynamics of inclusion and sale-able diversity.

Lately poet Jillian Weise has been making some hilarious videos about the AWP and disability. Sporting a hideous blonde wig, and cradling a lap dog, Jillian offers us a persona, one “Tipsy Tullivan” a peachy, lubricious  narrator who talks to the able bodied writing cabal with insouciance and back handed truth. I’m gladdened by Tipsy who I suspect has a tattered copy of Marcuse’s “One Dimensional Man” hidden behind her gladiolas.

Here is one of her righteous “vids”.

Now that the NY Times has offered a rather narrow “overview” of growth attenuation I’m reposting my first blog post on the subject. I’ve not changed my view on this matter.

Growth Attenuation: Say It Ain’t So

I am always the last person to hear about major stories.  For instance I just found out last week that “Shoeless Joe” of the Chicago White Sox may have thrown the World Series back in 1919.  “Say it ain’t so, Joe!”

When my wife Connie read me the article in today’s Columbus Dispatch about a disabled girl who is putatively named Ashley and who has been rendered permanently child like through a surgical procedure that is designed to keep her small as a kind of accommodation for her care giving parents I was not only shocked but I wondered how I had missed the story.  There are already a number of significant posts on disability related blogs having to do with this story and I want to suggest that readers of this site explore what many disability bloggers are saying about this matter.  Alas, a Blog is a good place to start.  And Blue, of The Gimp Parade had this to say in her post Frozen Girl.  I’m under the impression she’ll write more when she’s feeling better. Feel better Blue.  (Here is another post, ‘here” being the blog of Wheelchair Dancer.  She also had this to say.  And this.)

I am not a medical ethicist nor am I the care giver of a profoundly disabled person who is largely immobile and who is additionally a mentally disabled person.  Nevertheless after hearing this story this morning I found myself shuddering and I said to Connie: “That’s just plain wrong.”

Ashley’s parents argue on their blog that a medical procedure they call the “Ashley Treatment” that they requested and which was in turn performed and that was designed to keep their “pillow angel” forever small was a necessary and entirely utilitarian operation.  The girl’s uterus was removed.  Her breast buds were removed.  She received major doses of hormones, all to assure that she will not grow into adulthood.  The utilitarian aspect of her parents’ argument is that if Ashley were to grow into an adult she would be difficult to transport.  She would be heavier in her bed.  She might have worsening bed sores.  If she became a grown woman her parents wouldn’t be able to carry her from place to place.

As you read the associated blogs and news stories you will see that several medical ethicists have weighed in to say that the entire procedure is troubling.

I teach disability studies and I’m certain that we will be talking about this case in class next week.

I wish only to say the following as a measure of my personal alarm about this story:

My sister who is a physician took the Hippocratic Oath.  I was there when she took it.  A primary principle of medical ethics calls upon physicians to do no harm.

I will leave aside the utilitarian dimension of Ashley’s parents’ argument that by keeping her small they can better care for her.  That position is uncontestable and consequently in rhetorical terms it’s made of what the Greeks called “logos” which is to say that it sounds true.  But this assertion is also tinged with what the Greeks called “pathos” which means that the argument is driven by an emotional component.  Her parents call her their “pillow angel” because she’s good and quiet when she’s lying in her bed.  The figuration in this appellation is obviously sentimental and infantilizing and the Greeks would be hip to this as a tricky emotive plea within the tenor of an argument.  Pathos is always to be distrusted as Aristotle well knew.

I simply want to add that when we do potential harm to another being we are straying from the accepted and ethical criteria of medicine.  To pretend that by keeping Ashley small her parents are doing her a service is to confuse their own desire for an accommodation with the real story of Ashley’s life.  That’s my view and I’m sticking to it.

I am blind.  My wife has fabulous eyesight.  Perhaps it would be more convenient for me if Connie was blinded by a medical procedure so she could know the daily frustrations I experience around our house.  Perhaps if she had to walk in the rain to get the public bus that always seems to come late, well that would be good for our relationship.  And Connie would then likely have a guide dog as I do, and we’d go everywhere together.

When we imagine that by means of surgery and drugs that we’re doing a good thing by making another person’s body and life fit our own convenience we are essentially confusing utility with ethics.  Ashley, who cannot speak for herself has been rendered an object in this process.  Those in the medical ethics and disability communities who see a connection between this procedure and eugenics are in my view not wrong.  I’m very troubled by this story and I sense that my gut reaction is truly the ethical position.

S.K.

Tragic update as of today, October 10, 2007: “Doctor at center of stunting debate kills himself”

Read also: TV Land, Down and Dirty, The Ashley Treatment: Is It Just Me?, Anne McDonald. Don’t Call Her a Pillow Angel

Here is a link at NPR: Parents’ Plan to Stunt Girl’s Growth Sparks Debate

Ja

My father died on Easter Sunday sixteen years ago. On that day I was busy, flying home to New York from Columbus, Ohio where my wife and I had just bought a house. We boarded a jet, discovered ourselves to be the only people on the plane other than the folk singer Judy Collins.

I fell asleep and somewhere over Buffalo I woke with a start, hearing a voice in my head, not precisely my father’s voice, but something patriarchal for sure, and the words were dreadful: “It’s Easter Sunday, 2000 and your father has just died.” I thought I was tired—knew it. “You’re just tired,” I said half aloud so that my wife looked at me and said, “what did you say?” I said “nothing” as in, “oh, nothing” because how do you say you’ve heard Jehovah explaining the death of your father?

When we got home there was a message on our answering machine from my sister. And so of course the premonitory “thing” was true and while I’ve since studied the history of hearing voices, “paracusia” as it’s known in Greek, I’ve never been able to fully explain or shake off that moment on a commuter jet. Was it Jesus I’d heard? Was it one of the apostles? I’d been close to my father in a complex way, perhaps as all sons must be with their dads, for he was by turns loving and aloof in sequences that always seemed to run against whatever it was I needed. But I was close to him and something vatic and unexplainable had testified to that love. That’s how I came to understand the voice, the unsought quickened narration of his passing—and I remember that I felt him, my father, flying over our airplane on his way.

In his book “Telling the Truth: The Gospel as Tragedy, Comedy, and Fairy Tale” Frederick Buechner writes: “There is a fragrance in the air, a certain passage of a song, an old photograph falling out from the pages of a book, the sound of somebody’s voice in the hall that makes your heart leap and fills your eyes with tears. Who can say when or how it will be that something easters up out of the dimness to remind us of a time before we were born and after we will die?”

I’m hearing my father’s voice today. It is all voices. It’s an eastering voice. And because it feels right to say so, I think his voice is right above.

That was his gift to me on Easter sixteen years ago. There are things we can know, and which, in turn, we do not have to explain.

Guide dog schools in the United States, charities all, like to say blind people are completed or set free by having dogs, an assertion that invites charitable dollars but isn’t entirely true. Fund raising lingo varies from school to school but the general pretense is: “with” a guide dog the blind have new opportunities, hope, freedom, and dignity leaving the public to imagine “without” a dog blind people are rather wretched indeed.

One school has the motto: “open your hearts for closed eyes” which is presumably Dickensian enough to moisten donors.

I am alive because of my guide dogs. I can never say enough about the advantages of having a professionally trained service dog by my side.

But I’m not more dignified because of my dog. I am more or less dignified because of myself.

Does the self, in the case of dog loving men and women feel better in situ “mitt” canine?

You bet. But follow the thread: is a man or woman more dignified because they take Prozac?

Dignitas, from Latin, means worthy. I am not more or less worthy because of my dog.

Now it costs a lot of money to breed, raise, and train each and every guide dog. It is altogether fit and appropriate to ask the public to assist with charitable dollars. But why the old fashioned idea that the blind are either dignified or without worth according to the provision of your services?

Tell true stories of success and joy. Leave out the semiotics of wretchedness.

If the guide dog schools tried this they’d be as daring as their clients who face the unknown with a strong belief in essential goodness.

A friend is rereading Gaston Bachelard. She tells me by telephone. I picture revery as satellite transmissions. Oh Gaston, who wrote: “Daydream transports the dreamer outside the immediate world to a world that bears the mark of infinity.”

Oh to be transported each moment, so your house is never static but always in support of being.

And to be done with preparation and the politics of appearance.

Oh Gaston! “Toujours, imaginer sera plus grand que vivre.”

John Lennon said: “I’d sooner be Zappa.” I say, “I’d sooner be Bachelard.”

Which is the point of course. We’re all Gaston Bachelard. We’re all arriving, just now, just here, with the intimations of star-feathers and ancestral eyelashes blinking with spring, as this is all springs, and the heart is every heart and let’s be clear our hearts are dream houses with the windows wide open.

We’re all Gaston Bachelard. “A word is a bud attempting to become a twig. How can one not dream while writing? It is the pen which dreams. The blank page gives the right to dream.”

I even love his jokes: “Two half philosophers will probably never a whole metaphysician make.”

Some mornings we tinker at the edges of the page. Our houses are not yet warm with sun though light is coming up. We drink coffee. Listen to the old plumbing inside walls. Peel an orange. Remember even a minor event in life is an event of the world.

Image: classic desk telephone, black, with dial, circa 1950.

My mother was an alcoholic and was for the most part silent in the house. I always kept the silence for I understood and felt adult sorrows, much as dogs sense the unhappiness of their owners. Silence is always the giveaway in tragedy.

But a weird and wonderful change came over my mother whenever she was on the telephone. It was fifties phone: black and made of bakelight, a proto-plastic of great density. It was heavy as a paving stone, squat as a porcupine. And like an animal it sat in its protected corner in a shadowy nest of paper scraps and broken pencils. Because the phone was stationary my mother stood in the corner of the kitchen with her back to the room and leaned into that small corner and talked in earnest.

That was when she laughed.

While much of her day was spent in furtive retreat, while she slept at midday with the curtains drawn, while she often scowled in her privacies, the gadget, the appliance, the domestic device, the horn offered her a district of hilarity. She swayed in the corner, elbows propped on the formica and laughed.

In her laughter she was living, active, open.

In her laughter she was breathing, gasping, even thirsty.

I didn’t listen to what she was actually saying.

I did hear names—knew she was talking about people. Doris, Anna, Sonya—the names were the governing order of the laughter.

I was busy whittling the points of pencils with a jackknife. Blind kid with knife working diligently in the adjoining room…and then a windstorm of laughter—high, musical laughter, ascendant, open, rushing forward…

She laughed then listened, laughed again.

The laughter was like soap on the floor.

It was like the light at the end of the garden.

When she put the receiver back in its cradle she went absolutely silent.

I wanted the telephone.

It was a vessel.

There were people below decks.

When I was alone I picked up the receiver. It was heavy as a hammer. I put it to my ear and heard the  steady and flawless dial tone. It was like hearing a sound from beneath the house.

And I knew that if I waited a few moments the operator would speak.

She would tell me the time. Call me sweetie. Her voice, distilled from the darkness.

She was just a bit of the shy, unasked for sweetness of things.

(Image: black & white still photograph, Dr. Jekyll and Mr. Hyde)

The only thing that trickles down in America is convenience: a suitably value neutral noun for a nation still struggling with Jefferson’s pursuit of happiness. Easy; proceeding without difficulty; advantaged—whether the subject is Wall Street, Madison Avenue, or Pennsylvania Avenue, the “flow” behind attainment is universally customized for ease. As a proposition ease sells better than happiness, the latter being too un-Christian or simply precarious as an appeal to voters for how would a coal miner become happy? He’d like a decent house, medical care, maybe a bass fishing boat. No commonsensical politician would ever promise these things but convenience allows for advantaged or leveraged inconvenience—“you wanted that job, but they had to give it to a minority applicant instead…” (Hats off to the ghost of Jessie Helms…)

Money never trickles down in America but suspicion and ill will are spreadable currencies. After all, if a man or woman isn’t happy, then he or she must by the laws of convenience envy someone who’s in good spirits. Envy is the gold standard of human psychology, not your first poopie as Freud would have it. Carl Jung’s theory of the “shadow” is more useful when thinking about the politics of convenience. As Stephen Diamond writes at Psychology Today:

‘‘The shadow,’’ wrote Jung (1963), is ‘‘that hidden, repressed, for the most part inferior and guilt-laden personality whose ultimate ramifications reach back into the realm of our animal ancestors and so comprise the whole historical aspect of the unconscious’’ (cited in Diamond, p. 96). The shadow is a primordial part of our human inheritance, which, try as we might, can never be eluded. The pervasive Freudian defense mechanism known as projection is how most people deny their shadow, unconsciously casting it onto others so as to avoid confronting it in oneself. Such projection of the shadow is engaged in not only by individuals but groups, cults, religions, and entire countries, and commonly occurs during wars and other contentious conflicts in which the outsider, enemy or adversary is made a scapegoat, dehumanized, and demonized. Two World Wars and the current escalation of violence testify to the terrible truth of this collective phenomenon. Since the turn of the twenty-first century we are witnessing a menacing resurgence of epidemic demonization or collective psychosis in the seemingly inevitable violent global collision between radical Islam and Judeo-Christian or secular western culture, each side projecting its collective shadow and perceiving the other as evil incarnate. 

Shadow projection is easy—even a kindergartner does it. As a disabled child I learned this first hand. I was a movie screen for shadow projections.  In grade school I received many lessons:

1. Sighted children shared nothing.
2. No one played fair.
3. Hitting people was easy and the blind kid was a perfect target.
4. Hiding things from the blind child was sport.
5. Disarranging the blind kid’s possessions was also rather fun.
6. See above.
7. Sorry is absurd.
8. Steal soap from the blind kid.
9. Push him in the toilet whenever you have a chance.
10. Always take the blind kid’s lunch.

Shadow projection is automatic. It’s the foundation of convenience. Once a person has been scapegoated then the utility of the projection becomes a conscious narrative. “He’s such a dweeb,” says the kid who’s pushed the disabled child into a wall. “He’s retarded.”

**

The Laws of Convenience are opposed to happiness. If we picture the LOC as an engine in the manner of DeLeuze, then it’s appropriate to say it runs on loss—whether it’s your mother’s breast or your neighbor’s kidney shaped swimming pool, the psyche doesn’t own it, cannot own it—so deprivation is its gasoline.

When the able bodied project their shadows on the disabled they’re saying in the unspoken lingo of the LOC, “you people are deprived and I will never be you…unless…”

And so, you betcha, another of the LOC is the “unless principle” (for so I shall call it) which is essentially Jungian. It’s the loathing one feels at perceiving the immanence of the shadow. This perception means knowledge but it’s incomplete—I don’t like you. I don’t know precisely why, but it’s convenient to say “I’ll never be you” and then the concomitant shiver…”unless”…which all rational beings must feel if they’re to have a self. I am me. I am not you. I am not my mother’s breast. The language most often used for this fragmentary consideration is represented in the phrase: “there but for the grace of God go I”.

The LOC employs God as the keystone of “unless”—which, is of course, one of the reasons fundamentalist types frequently approach the disabled in public spaces and insist on praying for them. Their shadows say, “I might be you, but with the will of God I will forever not be you, in acknowledgment of my faith, amen.”

This leads us to the next LOC which is the enforcement of sublimation by projection. The disabled must necessarily remain in their place if I’m to remain elect.

(You may substitute jews, muslims, women, people of color, queers, and your poorer neighbors, for another aspect of enforcement by sublimation is it’s protean queasiness. The Shadow is always thinking about—nay, sometimes planning on throwing up.)

**

Fundamentalism, whether Christian, Muslim, Judaic, Hindu, Buddhist, or Atheistic, is always predicated on convenience. There’s always a neck that deserves to be stepped on.

The disabled neck gets its comeuppance whenever shadow-convenience is in operation.

Donald Trump, the putative Republican nominee-to-be for President in 2016 famously mocked the physical disability of Serge Kovaleski, a reporter for the New York Times.

Katrina Pierson, Donald Trump’s campaign spokesperson, a former Tea Party volunteer for Ted Cruz, once referred to David Dewhurst, a disabled veteran running against Cruz as “deformed”.

Convenience, the state of being able to proceed with something with little or no difficulty has a shadow problem with those who must proceed with considerable strain.

One may consider this to be the final Law of Convenience. We don’t currently have a word for it, so I’m going to offer a neologism:

Slick plus bigotry equals “slickotry”—always glib on the outside. And on the inside, where things matter, it’s marked by thousands of tiny bat-like shadows.

I was talking to myself rather often “post-dog”—which I imagined meant that happiness was having its way with me.

“Maybe I’m developing a talent for contentment,” I thought. “How often do we have the chance to admit this in our lives?” I thought.

“As often as you like,” I said.

“Be joyful as often as possible,” I said.

Corky and I rode the subway to Coney Island.  It was April and off season, but the famed Boardwalk was a grand place for a brisk walk. It was a blustery weekday in early spring and there were very few people about. We pounded down the wood planks fronting the ocean and I said things about well being softly, the way self-talkers tend to do. Corky had her head up, very high, to scent the Atlantic, and it was safe to imagine she was also thinking about delight.

Aristotle described happiness as “human flourishing” which he said involved activity and exhibiting virtue, and both should be in accord with reason. “Corky,” I said, remembering a day from childhood, “no one can be happy while walking the railing of a bridge…” “There was no reason in my youth,” I said. “And now you’re here and you are my virtue,” I said. I wasn’t sure what this meant. “A dog can’t be my full virtue,” I said. “She can only be the agent of my honor,” I said. “But it’s lovely, Corky, to be walking the boardwalk with you and the ghost of Aristotle,” I said.

A policeman approached and said, “Are you OK?” “He’s seen my lips moving,” I thought. “He probably thinks I’m lost,” I thought.

Could I tell him that happiness was having it’s way with me? Tell him about Aristotle’s sense of “Eudaimonia”—good spirit; a burgeoning; a man and his dog growing wings?

Could I say that after years I was seeing my life and the surroundings in which I found myself, finally, as objectively desirable? Would anyone on the street, much less a cop, know what I was feeling? I tried to imagine “joy-with-strangers-day” in New York. Something like the Reggae “Sun Splash” in Jamaica.

“I’m just happy,” I said to the policeman who was taken aback. “That’s a first for me,” he said. “I mean, no one ever says that, even at Coney Island!”

Had I been a self-talker throughout my life? I didn’t think so. In childhood development it’s called “private speech”—kids repeat the words they’re hearing, perhaps as a way to absorb them. “Maybe,” I thought, “I’m having the childhood I should have had.”

Aristotle described happiness as “human flourishing” which he said involved activity and exhibiting virtue, both of which should be in accord with reason. It’s no stretch to say America was, from its beginning, an Aristotelian state. Thomas Jefferson’s “pursuit” of happiness is tied inexorably to virtue, to reason, and to action. When John F. Kennedy called upon Americans to ask what they can do for their country he was echoing Jefferson’s idealism—happiness is crafted in action, and action must be in the service of others.

My “take” on Donald Trump is that he is decidedly un-American precisely because his call “to make America great again” has virtually nothing to do with the contentment or well being of our citizens. He espouses no virtues; promotes no civic minded activity in his followers; and virtually all his rhetoric is driven by pathos as opposed to logos. He is not at all interested in human flourishing.

Many have described his taint of small “f” fascism. His appeals to racism and misogyny are well documented. No one can know just how real these impressions are or to what extent his contemptible language reflects his personal thinking. But we can analyze his campaign statements in terms of American virtue.

It’s in this latter area I believe our nation’s broadcasters are letting us down. Because no one demands that he talk about virtues, he’s free to whip up fear and loathing. Trump’s campaign is predicated on extremist lies. To echo Barack Obama’s last State of the Union Address, the United States is not disrespected in the world. We are not a failing state. We have a vigorous economy. We are safer from attack than any other nation on earth. A true presidential call to action in this time, which is to say a virtuous campaign, an American campaign would incite our citizens to action—whether on behalf of the poor, the climate, our infrastructure, the aspirations of young people. Trump merely tells his followers that others are stealing their right to happiness, a stance many have compared to Hitler’s rhetoric.

In America we know that no one can steal your right to happiness. The freedom to strive is the measure of our diversity and our national aspiration.

Donald J. Trump is many things. But “American” he is not, except to say, he belongs to a long tradition of ugly political snake oil salesmen best characterized by H.L. Mencken:

The whole aim of practical politics is to keep the populace alarmed (and hence clamorous to be led to safety) by menacing it with an endless series of hobgoblins, all of them imaginary.

With Trump, it’s all Hobgoblins, zero of happiness; not even the promise of happiness, for his slogan “Make America Great Again” is one of Mencken’s goblins, signifying greatness for only some, not others. No virtue to be found that way. But plenty of vicious activity.

Meaningful participation for people with disabilities: a pending challenge for an invisible billion

GENEVA (4 March 2016) – “People with disabilities constitute at least 15 percent of the world population – the equivalent of the entire population of the Americas,” said the UN Special Rapporteur on the rights of persons with disabilities, Catalina Devandas Aguilar, who presented a report* today at the Human Rights Council on the participation of people with disabilities in public life and decision-making.

“Due to stigma we are mostly invisible, we rarely occupy positions in governments, and we are normally not consulted about policy-making, even when the issue directly affects us,” said Ms. Devandas Aguilar.

The human rights expert recalled that the Convention on the Rights of Persons with Disabilities, which has been ratified by 162 countries, obliges States to consult closely with people with disabilities, recognizing their right to participate in all areas of public decision-making, not just those related to their disabilities.

However, according to the Special Rapporteur this is still a distant dream. “Our voices are simply not heard. Our exclusion is a loss for society as a whole. And it goes against the idea of ‘leaving no one behind’. At this rate we won`t meet the new Sustainable Development Goals unless people with disabilities are treated differently,” she warned.

In her report, Ms. Devandas Aguilar urges all governments to engage in direct consultation with organizations of people with disabilities, rather than only those that advocate on their behalf. “States must prioritize the participation of organizations led and operated by persons with disabilities and support their establishment and functioning,” she explained.

The Special Rapporteur stressed the importance of engaging with groups who need considerable support, such as autistic people and those with intellectual or psychosocial disabilities.

“States must consult everyone and take their views into account; it’s simply not acceptable to exclude some people”, she said. Ms. Devandas Aguilar also raised concerns about the precarious situation of women and girls with disabilities, pointing out that in many places it is still unsafe for them to take part in open consultations.
(*) Check the Special Rapporteur’s full report (A/HRC/31/62): http://ap.ohchr.org/documents/dpage_e.aspx?si=A/HRC/31/62

The Special Rapporteur also presented her report on the Republic of Moldova (A/HRC/31/62/Add.2): http://ap.ohchr.org/documents/dpage_e.aspx?si=A/HRC/31/62/Add.1

Ms. Catalina Devandas Aguilar (Costa Rica) was designated as the first Special Rapporteur on the rights of persons with disabilities in June 2014 by the UN Human Rights Council. Ms. Devandas Aguilar has worked extensively on disability issues at the national, regional and international level with the Disability Rights Advocacy Fund, the UN unit responsible for the Convention on the Rights of Persons with Disabilities and the World Bank. Her work has focused on the rights of women with disabilities and the rights of indigenous peoples with disabilities. Learn more, log on to: http://www.ohchr.org/EN/Issues/Disability/SRDisabilities/Pages/SRDisabilitiesIndex.aspx

The Special Rapporteurs are part of what is known as the Special Procedures of the Human Rights Council. Special Procedures, the largest body of independent experts in the UN Human Rights system, is the general name of the Council’s independent fact-finding and monitoring mechanisms that address either specific country situations or thematic issues in all parts of the world. Special Procedures’ experts work on a voluntary basis; they are not UN staff and do not receive a salary for their work. They are independent from any government or organization and serve in their individual capacity.

Read the Convention on the Rights of Persons with Disabilities: http://www.ohchr.org/EN/HRBodies/CRPD/Pages/ConventionRightsPersonsWithDisabilities.aspx

For more information and media requests, please contact: Ms. Cristina Michels (+41 22 928 9866 / cmichels@ohchr.org) or write to srdisability@ohchr.org

For media inquiries related to other UN independent experts:
Xabier Celaya, UN Human Rights – Media Unit (+41 22 917 9383 / xcelaya@ohchr.org)

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