Autistic People Are Human

So I'm a day late but I still want to participate in this campaign to change the Google search results for "autistic people are."

Here is what they are now:

If you can't see the image, it's a screengrab of a Google search box with the phrase "autistic people are" and a list of four choices to complete the phrase. The four words are, in order, "annoying," "smart," "evil," and "retarded." 

Annoying. Evil. Retarded.

Evil? Evil?!

I'll tell you, that one still surprises me. I've seen it before --- seen "autistic" used as shorthand for some moral failing, usually selfishness or a lack of empathy --- but it still astonishes me to see that people apparently see us that way. I'm used to the "empty fortress" stereotypes, where people think we have no inner lives, no thoughts, no feelings, that our words and acts are just random spewage that we cannot possibly have intended, that cannot possibly be directed at any goal, anything we want. We can't want, remember?

That's the stereotype I grew up with. It's a depressing one, and still very much alive. You can see it underlying mainstream America's indifference to the abuse, neglect, and even murder of autistic children by their parents (or other caregivers). "Kids like that are hard to take care of," people will say, "it's no wonder she snapped," or "it's no wonder they weren't up to the job," or "What else were they supposed to do?" And the kids themselves, their deaths don't seem as tragic as the death of a normal child would be. Their lives were cut short, but what kind of a life would it have been, really? These people never grow up, they just get older. Forty years old, sitting in your parents' living room? That's no kind of a life at all. Isn't it almost for the best, to have spared them that?

(No, it's not for the best. In case you were wondering.)

But apparently there's a new stereotype coexisting with this one, that of the stone-cold killer. It cropped up in the coverage of the mass shooting at an elementary school in Newtown, Connecticut, and also of the one in Aurora, Colorado. People were asking, like they always do, who had done this, and how could they have done it? And one of the answers was, "It was a disturbed young man who may have been on the autism spectrum."

I don't know exactly when that autism stereotype started to take root in the public mind; it seems to have come up as people have started to be more aware that some autistic people can speak, go to school, attend mainstream classes, and do very well academically. When I was a child, this was not generally known, and people often expressed surprise that a child as articulate and precocious as I was could have autism.

Like Landon Bryce, I blame Simon Baron-Cohen's increasingly popular conception of autism for this development. I know that Professor Baron-Cohen does not think autistic people are evil, or even that we don't have feelings for other people, but the terminology he chose to use --- calling us poor "empathizers" --- conjures exactly that image in a reader's mind. 

All head and no heart. 

This, of course, is one of the reasons why I'm not mollified by seeing "smart" on the list as well: because I know that the Autistic Genius trope can blend seamlessly into the stone-cold killer. Both are unhindered by emotion or personal attachment, both can act with equal ruthlessness. The only difference is in what they do, how they direct their dispassionate efforts.

(The other reason is that smartness is often seen as a consolation prize: oh, you're autistic? You must be GREAT at math! What's that? You're not? Well, what good are you then?!)

So, what would I like people to know that autistic people are? 

Human.

That's all.

New Medicaid Regulations Are Open to Public Comment

A little over a month ago, the Centers for Medicare and Medicaid Services proposed some new rules for home- and community-based services for people with disabilities, trying to ensure that states do everything they can to make sure that disabled people covered by Medicaid can actually get the services they need in their own homes, or in supported residential settings where they have the same amount of freedom and control over their own lives that they would if they were living on their own.


That's the spirit of the law, anyway. Lots of advocacy groups made up of people whom this law is supposed to benefit have written recommendations for wording that makes sure the letter of the law honors the spirit --- that health-care providers receiving Medicaid funding to give people supportive housing don't just take the money and throw the intended beneficiaries into a group home that reproduces all the restrictions, power dynamics, and other bad things about institutions in a somewhat different setting.


The rule change is open to public comment until Monday; I'd like to add my voice to a chorus of voices emphasizing just how important autonomy and freedom from restriction are. If you have anything to say about it, especially if you've got any concrete ideas or relevant personal experiences, go here, click the big blue "Comment Now!" button, and let loose.


The Autistic Self-Advocacy Network and the Administration on Intellectual and Developmental Disabilities have both written about this proposed rule change; AIDD's page  is an easy-to-read summary of what the rules entail, while ASAN's page is more of a critique.


Here is the proposed definition of "home and community-based setting":

(i) The setting is integrated in, and facilitates the individual's full access to, the greater community, including opportunities to seek employment and work in competitive integrated settings, engage in community life, control personal resources, and receive services in the community, in the same manner as individuals without disabilities. 

(ii) The setting is selected by the individual from among all available alternatives and is identified in the person-centered service plan. 

(iii) An individual's essential personal rights of privacy, dignity and respect, and freedom from coercion and restraint are protected. 

(iv) Individual initiative, autonomy, and independence in making life choices, including but not limited to, daily activities, physical environment, and with whom to interact are optimized and not regimented. 

(v) Individual choice regarding services and supports, and who provides them, is facilitated. 

(vi) In a provider-owned or controlled residential setting, the following additional conditions must be met. Any modification of the conditions, for example, to address the safety needs of an individual with dementia, must be supported by a specific assessed need and documented in the person-centered service plan: 

  (A) The unit or room is a specific physical place that can be owned, rented or occupied under another legally enforceable agreement by the individual receiving services, and the individual has, at a minimum, the same responsibilities and protections from eviction that tenants have under the landlord tenant law of the State, county, city or other designated entity; 

(B) Each individual has privacy in their sleeping or living unit:         (1) Units have lockable entrance doors, with appropriate staff having keys to doors;         (2) Individuals share units only at the individual's choice; and         (3) Individuals have the freedom to furnish and decorate their sleeping or living units. 

(C) Individuals have the freedom and support to control their own schedules and activities, and have access to food at any time; 

(D) Individuals are able to have visitors of their choosing at any time; and  

(E) The setting is physically accessible to the individual.

They also spell out what a "home and community-based setting is not:

Home and community-based settings do not include the following: 

(i) A nursing facility; 

(ii) An institution for mental diseases; 

(iii) An intermediate care facility for [people with intellectual disabilities] 

(iv) A hospital providing long-term care services; or 

(v) Any other locations that have qualities of an institutional setting, as determined by the Secretary. The Secretary will apply a rebuttable presumption that a setting is not a home and community-based setting, and engage in heightened scrutiny, for any setting that is located in a building that is also a publicly or privately operated facility that provides inpatient or institutional treatment, or in a building on the grounds of, or immediately adjacent to, a public institution, or disability-specific housing complex.

And here is the definition of "person-centered service plan": 

The person-centered service plan must reflect the services and supports that are important for the individual to meet the needs identified through an assessment of functional need, as well as what is important to the individual with regard to preferences for the delivery of such services and supports. Commensurate with the level of need of the individual, and the scope of services and supports available under the State plan HCBS benefit, the plan must: 

(1) Reflect that the setting in which the individual resides is chosen by the individual. 

(2) Reflect the individual's strengths and preferences. 

(3) Reflect clinical and support needs as identified through an assessment of functional need. 

(4) Include individually identified goals and desired outcomes. 

(5) Reflect the services and supports (paid and unpaid) that will assist the individual to achieve identified goals, and the providers of those services and supports, including natural supports. Natural supports cannot supplant needed paid services unless the natural supports are unpaid supports that are provided voluntarily to the individual in lieu of State plan HCBS. 

(6) Reflect risk factors and measures in place to minimize them, including Individualized backup plans. 

(7) Be understandable to the individual receiving services and supports, and the individuals important in supporting him or her. 

(8) Identify the individual and/or entity responsible for monitoring the plan. 

(9) Be finalized and agreed to in writing by the individual and signed by all individuals and providers responsible for its implementation. 

(10) Be distributed to the individual and other people involved in the plan. 

(11) Include those services, the purchase or control of which the individual elects to self-direct, meeting the requirements of [earlier section] of this subpart. 

(12) Prevent the provision of unnecessary or inappropriate care. 

(13) Other requirements as determined by the Secretary. 

... and rules for how the service plan should be drawn up:

Based on the independent assessment required in [earlier section] of this subpart, the State must develop (or approve, if the plan is developed by others) a written service plan jointly with the individual (including, for purposes of this paragraph, the individual and the individual's authorized representative if applicable). The person-centered planning process is driven by the individual. The process: 

(1) Includes people chosen by the individual. 

(2) Provides necessary information and support to ensure that the individual directs the process to the maximum extent possible, and is enabled to make informed choices and decisions. 

(3) Is timely and occurs at times and locations of convenience to the individual. 

(4) Reflects cultural considerations of the individual. 

(5) Includes strategies for solving conflict or disagreement within the process, including clear conflict-of-interest guidelines for all planning procedures. 

(6) Offers choices to the individual regarding the services and supports they receive and from whom. 

(7) Includes a method for the individual to request updates to the plan.

(8) Records the alternative home and community-based settings that were considered by the individual.

(That has got to be the greatest number of time I have had to type the word "individual" on any given day.)


I think this all sounds fairly complete, and airtight, but then I have zero experience actually living in this kind of environment.  


What do you, my readers, think? Do any of you have anything you would add, or change, to the above specifications? Without your input, I'm pretty much going to be echoing ASAN's recommendations in my comment on regulations.gov, but I'll hold off on commenting until, say, tomorrow night or Monday morning to see if I get any additional recommendations from comments here.  

Autism Speaks Interrupts My Etsy Browsing

I was poking around on Etsy when I spotted this:

A beautiful puzzle piece inscribed with the word love. This necklace is meant to show support and awareness for autism of all types.

...

I will be donating 100% of the price of this necklace to Autism Speaks to fund awareness and research.

This annoyed and saddened me, for reasons that will be obvious to anyone who's been following the neurodiversity blogosphere for any length of time.

(If you haven't, here's a brief list of the things autistic self-advocates don't like about Autism Speaks: eliminationist rhetoric*; non-representation/token, non-policy-setting representation** of autistic people within their organization; a poor record of actually providing material help to anyone, even when they've promised to do so; advertisements and "awareness campaigns" that portray autism as a terrible tragedy, and which also portray autistic children as dehumanized burdens on their parents; past endorsement of the wrong and dangerous vaccines-cause-autism hypothesis by the organization's founders; research funding practices that prioritize research into causes of autism while providing little to no funding for research into what kinds of things might help to improve the quality of existing autistic people's lives; a pattern of hostility and/or indifference toward autistic adults who try to engage with the organization; and exploitation and deception of families of autistic children who decide to collaborate with them on "awareness" projects).

It really makes me sad that an organization that does as much harm to autistic people as Autism Speaks does is so well-known and respected. No other autism-related nonprofit comes close to having that kind of name recognition, so you often see well-intentioned people who just want to help autistic people and their families deciding to donate to Autism Speaks, because it's the autism charity they've heard of, and they haven't heard any of our criticisms of it.

I wrote a short, hopefully very nicely-worded message to the other Etsy seller to try and get her to reconsider her decision to donate to Autism Speaks:

Hi, [other Etsy seller].

I really appreciate you wanting to do something to help out autistic people, but I thought you should know that lots of us have serious problems with Autism Speaks. I know it's the leading autism charity, but many of us in the autistic community feel that Autism Speaks is more interested in ridding the world of people like us than it is in helping us. There are other autism-related charities/nonprofits that are also run by autistic people --- the Autistic Self-Advocacy Network is one --- which might be better places to donate your proceeds if you're interested in showing support for autistic people.

Again, I'm sorry if this sounds angry or critical --- I'm touched by your sentiment, and do think you have only the best intentions. I wouldn't badger you with this if the differences between my community and Autism Speaks were any smaller or less bitter.

Thank you for reading, and for your consideration.

[me]

When I was writing it, though, I failed to come up with any other autism charities or nonprofits that are run by and for autistic people other than ASAN, which annoys me because a) there are quite a few, with differing emphases, and b) some autistic people think ASAN is problematic, too.

So, here are some of the other, more autistic-people-friendly autism organizations:

Academic Autistic Spectrum Partnership in Research and Education (AASPIRE)

Autism Network International (ANI)

Autism Women's Network (AWN)

The Autism Acceptance Project (TAAP)

... and here are some cross-disability organizations:

ADAPT

Self Advocates Becoming Empowered (SABE)

TASH

The National Council on Independent Living

EDIT 4/14: There are a couple of other organizations I want to mention, too: Autistics.org (which Meg Evans suggested in comments) and NOEWAIT, the National Organization to End the Waitlists, which is dedicated to improving access to support services for all developmentally disabled people.

*This should really be its own post, but here are a few examples: a video released in 2006, "Autism Every Day," included a scene in which then-Senior Vice President Alison Tepper Singer (who has since resigned from Autism Speaks over the vaccine issue) speaks about a fantasy she had of driving her car off a bridge with her autistic daughter and herself in it, and about how the one thing that prevented her from acting on it was her desire not to leave her normal daughter an orphan; a documentary called "Autism: True Lives" included a similar scene in which Harry Slatkin, husband of Autism Speaks board member Laura Slatkin, talks about both worrying and also almost hoping their autistic son might fall into a pond in their backyard and drown; a statement in Parade magazine by Autism Speaks co-founder and board member Suzanne Wright that their goal is to "eradicate autism for the next generation"; and innumerable video spots comparing autism to various terminal illnesses like cancer and AIDS, or to catastrophic, life-threatening events like car crashes, lightning strikes and kidnappings.

**While I think their addition of John Elder Robison for having no autistic board members --- other self-advocates are more cynical, and don't think anything will come of it. (See Sarah, ABFH, Clay, and also John Elder Robison's own assessment of his role on Autism Speaks's scientific advisory board).

Ari Ne'eman Interviewed at Wired.com

Ari Ne'eman, founding president of the Autistic Self-Advocacy Network and now a member of the National Council on Disability, spoke to Wired.com back in July, and they have now posted the interview on their Wired Science blog.

Here are some excerpts from the interview that I thought were particularly awesome:

Wired.com: Many Wired readers work in the tech and software industries. How could they help improve the lives of autistic people?

Ne'eman: If we put one-tenth of the money currently spent on looking for causes and cures into developing technologies that enable autistic people with speech challenges to communicate more easily --- so-called augmentative and alternative communication [AAC] --- we'd have a vast improvement in the quality of life for autistic people and their family members.

We've already seen some very promising tools for AAC and other assistive technologies start proliferating on the iPad and the iPhone. But Medicaid won't pay for such dual-use devices, despite the fact that having an AAC app running on an iPad may be much cheaper and more functional than carrying around a dedicated AAC device. That should change, because AAC devices are currently too expensive and often not versatile enough to be used in a diverse set of circumstances.

Second, I'd love to see research into ways of using social media to improve access for disabled people. If there was some kind of web-based tool or mobile app that enables people to flag buildings with "very good" or "very bad" access, it could spur a lot of positive social change.

Finally, there should be websites or apps that enable disabled people to rate their service providers and record their experiences, like the websites that already exist for college students to rate their professors. The internet has proven to be very important for autistic people, because it's given us a chance to connect with each other and start to form a culture of our own. We've barely begun to tap the potential of handheld networked devices to assist with the kinds of deficits in executive functioning and life skills that many of us on the spectrum face. Mobile devices and apps could be very helpful in improving prospects for employment and education across the whole life span of autistic people --- not just when we're kids.

I love Ari's ideas about assistive technologies --- I would never have thought of using an iPad or iPhone as an AAC device*, but now that he suggests it, I can imagine it working well for that. I'm also enthusiastic about the web-based accessibility- and caregiver-rating. The accessibility-rating for places could speed up the currently-very-slow process of getting city governments to respond to people's complaints about poor accessibility through the Internet's ability to gather a critical mass of people calling for a given thing much more quickly than traditional, localized grassroots organizing. (Darned if I know how mobile devices and apps could help with education and employment, though, apart from their utility as AAC devices that he already mentioned).

(I can pretty easily imagine why Medicaid officials --- assuming they know about AAC apps for iPad/iPhone, which maybe they don't --- would be loath to use Medicaid funds to cover those things, even if they are cheaper and more practical: can you imagine the scandal if some deficit hawk in Congress were to discover Medicaid funds being used to provide iPhones to poor people with disabilities? The horror!)

More Ari:

Wired.com: Some of your critics suggest that as a "high-functioning" person with Asperger's syndrome, you present an overly rosy picture of life on the spectrum. You work in D.C., do a lot of public speaking and networking, and are obviously capable of things that someone who lives in a wheelchair or can't speak cannot do.

Ne'eman: I know quite a few people in D.C. who use wheelchairs, and I know people who use AAC devices and work in public policy. Some of my mentors fall into those categories. So while I'd agree that there are many things I do that some other autistic people can't, I wouldn't say that it's the fact that I'm not a wheelchair user or an AAC user that makes that the case.

I recognize that I'm fortunate in many respects and am able to do things that some other autistic people can't do. But I would also point out that these things didn't --- and don't now --- come easily to me. I've been fortunate to be able to count on the inclusive culture of the broader disability-rights movement to help support me.

There's a strange idea out there that neurodiversity advocates think that autistic life is all flowers and rainbows, but I don't know anyone who thinks that way. Most of us have had deeply personal experiences with social isolation, bullying and abuse, lack of support, discrimination, and plenty of other problems. But it's much more productive for us to focus on how we can improve people's lives than to keep presenting people as pitiable burdens.

No more pity. It doesn't help anybody.

Many of the bad things that autistic people struggle with are things that happen to us, rather than things that are bad about being autistic. Why is that an important distinction? I remember reading a blog post from a parent who pointed to two news stories. One was about a mother who had murdered her autistic child because she couldn't deal with the fact that he wasn't normal, and the other was about a school aide who had abused a child. And the blogger said, "This is what autism is like. That's why we need to find a cure."

I find that kind of thinking despicable: One would think the fault there isn't with autism, but with abusers and murderers! As long as we confuse bad things that happen to autistic people with what it means to be autistic, we're not going to be solving the problems that autistic people face in any meaningful way.
...
Wired.com: Though you criticize groups like Autism Speaks for focusing on a cure, if someone offered you a pill to wake up tomorrow without autism, would you take it?

Ne'eman: That's an intensely silly question. How can I draw a line around one part of my brain and say this is the autistic part, and the rest of me is something else? That way of looking at autism is predicated on the strange idea that there was or is a normal person somewhere inside me, hidden by autism, and struggling to get out. That's not reality.

As a society, our approach to autism is still primarily: "How do we make autistic people behave more normally? How do we get them to increase eye contact and make small talk while suppressing hand-flapping and other stims?" The inventor of a well-known form of behavioral intervention for autism, Dr. Ivar Lovaas, who passed away recently, said that his goal was to make autistic kids indistinguishable from their peers. That goal has more to do with increasing the comfort of non-autistic people than with what autistic people really need.

Lovaas also experimented with trying to make what he called effeminate boys normal. It was a silly idea around homosexuality, and it's a silly idea around autism. What if we asked instead, "How can we increase the quality of life for autistic people?" We wouldn't lose anything by that paradigm shift. We'd still be searching for ways to help autistic people communicate, stop dangerous and self-injurious behaviors, and make it easier for autistic people to have friends.

But the current bias in treatment --- which measures progress by how non-autistic a person looks --- would be taken away. Instead of trying to make autistic people normal, society should be asking us what we need to be happy.

*Partly because I can speak, and thus don't need to spend a lot of time pondering AAC, but mostly because I am kind of a technophobe and don't use a mobile computer; I don't always grasp everything they're capable of doing.

Justice Department Launches Investigation of JRC

Good news from Left Brain/Right Brain: In response to a letter of complaint written by disability advocate Nancy Weiss, who is co-director of the National Leadership Consortium on Developmental Disabilities and an Assistant Professor of Human Development and Family Studies at the University of Delaware, and signed by thirty-one disability organizations (including Weiss's organization, the NLCDD, TASH, the Autistic Self-Advocacy Network, and the National Disability Rights Network, but not including the Autism Society of America, which Weiss says, was contacted but refused to sign), the U.S. Department of Justice says it's opened a "routine investigation" of the infamous Judge Rotenberg Center in Canton, Massachusetts.

The investigation will seek to determine whether the JRC's practices violate Title III of the Americans with Disabilities Act, which prohibits discrimination against people because of their disabilities by any government agencies, nonprofit organizations, or private businesses that serve the public.

The initial letter of complaint that Nancy Weiss sent to the Justice Department (and also to the U.S. Department of Education, the U.S. Department of Health and Human Services, the Office on Disability within HHS, and to committees within both houses of the U.S. Congress whose areas of focus include education, and also to three international human-rights organizations: Amnesty International, Human Rights Watch and Physicians for Human Rights) spoke of the electrical shocks meted out to students every day at the Judge Rotenberg Center in broad terms as human rights violations; the language specific to the Americans with Disabilities Act and nondiscrimination appeared later, after the Justice Department responded that it may not have jurisdiction to enforce human-rights laws in a private facility, since the relevant law --- the Civil Rights of Institutionalized Persons Act --- applies only state-run institutions.

The logic in making this a claim of discrimination goes as follows:

(Quoted from Nancy Weiss's letter to the co-signers and other supporters of her September 2009 letter of complaint).

I suggested to [the Department of Justice] that they consider jurisdiction under the ADA on the basis that people with disabilities are being treated in ways that are neither legal nor would be tolerated if applied to people who do not have disabilities ... .

There's no way of knowing how long the investigation will take, but I am enormously glad the federal authorities are at least looking into it. What goes on at that "school" is nightmarish, and no living thing ought to be subjected to such treatment.

Help Jessica Davanzo

Shiva at Biodiverse Resistance has a post up about an American-born UK resident named Jessica Davanzo, who is facing deportation from her adoptive homeland because she left her abusive, UK-citizen ex-husband before her two-year spouse visa had been renewed.

Here is her story:

I originally came to England several years ago to study sculpture....I met and fell in love with a man whom I later married on October 3rd 2006, I moved over to England as his wife on October 15th 2006 on a 2 year spouse visa...I went immediately into full time employment, contributing to the local economy and have endeavored to immerse myself in all aspects of my new life and become involved in the community....sadly just after our marriage my husband changed drastically and became controlling and abusive to the point where I feared for my life and had no other option but to leave despite the fact that I tried all forms of counseling and anything I could possibly do to save our marriage...but my fleeing our marital home came just shy of the time when my marriage visa would have been up for renewal for indefinite leave to remain....I took on a management role in a new town and began my life again.....I worked extremely hard and built a new life for myself.....Under a tremendous amount of stress and pressure of my marriage breaking down and being alone in a new town taking on a new management role... I ended up in hospital with a rare neurological disease called Guillain-Barre syndrome which left me paralysed out of work and in hospital for some time....[...] After I recovered I felt compelled to take a job working as a carer for a woman in a wheelchair who also suffered from a neurological disease, though hers [was] genetic and more severe....After going through what I did I was humbled and wanted to make a difference in someone's life...Since that time I have become deeply immersed in my employer's life ....taking part in ensuring her every day [...] needs are met as well as helping her follow her dreams....I have completely given up my life in America for the one I have here, a place I know as home...after all this time, and all the struggles, first just surviving on my own after nearly two years of abuse...then fighting for my life in hospital and finally recovering and getting back into the work force, fully supporting myself and always paying national insurance etc.....never once getting recourse to public funds or income support....things had finally turned around...I got my own house, a job and my friends and family in a place that I loved only to get a letter from the Home Office alerting me that my application had been refused with no right to appeal....I am shocked and appalled that the message sent from Lawyers and Home Office seemed to indicate that had I stayed with an abusive man and risked my life I would have been granted the"privilege" of living in England...but instead after years of making a life for myself I am now being told that I must leave the only home I know.

What's at stake here is not just the quality of Jessica's life --- disastrous though it would be for her to be compelled to leave everyone she knows, start over and rebuild her life from scratch again --- but of Roxanne's (her employer, Roxanne Homayoun) as well.

Shiva's press release explains:

Roxanne, who has physical and visual impairments and requires 24-hour assistance, and is an activist for disability rights with an MA in 20th century history, said "Jessica is such a truly positive, honest and principled person that she has helped me to see that many of my dreams are still achievable, they just need modifying. I would be absolutely devastated if Jessica is deported."
...
Jessica's case brings together issues of vital concern for feminists, disability rights activists and all those who support the free movement of people across borders. The UK Government's decision to demand that she leave the country shows a complete disregard for the circumstances of women fleeing abusive relationships (if she had stayed within the relationship and continued to submit to her ex-husband's violence, she would have been permitted to stay in the country - what message does that send to women trapped in such situations? This is victim-blaming at its worst - women being punished for getting out of a life-threatening situation or rewarded for staying within it) and for the incredibly important role of PAs [Personal Assistants] in maintaining disabled people's independence.

The letter Jessica received from the Home Office claims that forcing her to leave the UK is not a breach of Jessica's human rights under Article 8 of the European Convention on Human Rights. However, they have totally failed to take into consideration the human rights of her employer, Roxanne, whose physical safety, freedom of private life and ability to participate in political society would all be put in serious jeopardy by the loss of her PA, given the extreme rarity of PAs with whom disabled employers are able to build up the sort of relationship (itself arguably "family life" under Article 8 of the ECHR) enjoyed by Roxanne and Jessica.

If the UK Government cared either about women survivors of marital abuse or about disabled people who need assistance to live independently (for whom it can take an extremely long time to find a PA with the right attitude to genuinely support their human right to choice and control over their own lives, and for whom losing such a PA could easily result in risk of institutionalisation or life-threatening neglect), then it would not have threatened Jessica with deportation. Jessica Must Stay!

Without Jessica, the quality of Roxanne's life would immediately deteriorate. She'd be on her own until she could find another PA, who may or may not be willing or able to help her maintain the same way of life she had with Jessica, and who in any case will be a stranger, not a trusted friend. At worst, as Shiva mentions, she might never get another PA and be institutionalized, or she might get a PA who neglects or abuses her.

It strikes me as particularly disgusting that this relationship, from which not only both partners, but also British society in general, derive such benefit should count for nothing to the immigration officials deciding Jessica's fate, especially when her marriage would have been sufficient to keep her in England. This, it seems to me, is a double standard privileging the nuclear family over all other possible household configurations.

There's a petition online here, telling Jessica's story and asking that she be granted an appeal, and a Facebook group supporting her.

You can also email the UK Home Office at public.enquiries@homeoffice.gsi.gov.uk, or, if you want to go right to the source, there's the UK Border Agency's case-resolution directorate, which you can reach at UKBApublicenquiries@ukba.gsi.gov.uk

Since Jessica used to be a US citizen, and would be deported here, I might as well throw in the e-mail contact form for the US Department of State. Let's get Hillary Clinton on their case!

Good luck, Jessica.

I Write Letters

From Sarah of Cat in a Dog's World and Nicole Belle of Crooks and Liars (via Shakesville), I heard about two very problematic candidates for high-level positions in the Obama administration: Larry Summers for Secretary of the Treasury and Robert F. Kennedy, Jr., for head of the Environmental Protection Agency.

Here's what I wrote on the "Contact" page of the new Obama website:

Dear President-Elect Obama,

In your campaign, you emphasized the need for change --- particularly change in the form of abandonment of the Bush administration's reckless commitment to ideology-based, counterfactual assumptions. That was the main reason I voted for you: because I wanted to see a President whose decisions would come from a thorough consideration of the evidence, not from gut feelings or party lines.

Yet I see two names mentioned for high offices in your administration --- Lawrence Summers for Secretary of the Treasury and Robert F. Kennedy, Jr., to head the Environmental Protection Agency --- whose selection would only propagate three of the more pernicious assumptions underlying Bush-era policy.

Those assumptions are: first, that scientific consensus can be ignored in policymaking; second, that less regulation and freer trade are always better economic policies; and third, that women are naturally second-class citizens. Choosing Lawrence Summers for Treasury Secretary (a position he held during the Clinton years) would commit US fiscal and trade policy to more of the same heedless deregulation that has destabilized our markets and caused millions of jobs to go overseas. Summers has also indicated a belief that women's continued underrepresentation in scientific, technical and mathematical professions is due to their own lack of interest or aptitude, which is a belief in conflict with the goal mentioned elsewhere on this site of including more women in those positions, both directly within your administration (and how would women accountants and financial analysts fare under a Secretary Summers?) and in academia and industry. Robert F. Kennedy, Jr., impassioned environmental activist though he may be, has publicized the idea that mercury compounds in vaccines cause autism, which is believed by almost every scientist in the field of autism to be complete nonsense. Given the urgency and complexity of the environmental problems we face, it's extremely important to make sure these decisions are in capable hands.

We can do better.

Yours in hope,

[me]

You can make your voice heard in several ways: you can fill out the Change.gov comment form, sign this petition, and/or email transition-team leader Valerie Jarrett at vjarrett@barackobama.com (H/T to Unapologetic Feminist for that suggestion).

Where Neurodiversity Meets Feminist Theory (Part III)

The last issue I want to address from Bumiller's article is the relationship between neurodiversity in particular (and the disability-rights movement in general) and feminism. She thinks they complement each other well in terms of agitating for, on many fronts, a more open, pluralistic and free society:

The neurodiversity movement, despite its own understanding of itself as engaged in a civil rights struggle, represents a novel form of group-based advocacy. Under present conditions, antidiscrimination principles provide an inadequate basis for the large-scale provision of services and educational opportunities for people with autism (O'Brien 2005). Many typical citizens resist inclusion of people with autism to avoid exposure to uncomfortable interactions with people whom they perceive to be antisocial, gender-inappropriate, or simply odd. More serious obstacles to inclusion result from the failure to support the high costs of treatment programs and the perceived threat of autistic people as dangerous. The responsibility of assuring disabled people's place in society goes far beyond the commitment to preserving individual rights; it necessitates a broader agenda as formulated by feminist disability studies. A more expansive model of inclusion needs to counteract the pull toward normalization and stake a claim about the harmful effects of devaluing all kinds of diversities, including those relating to gender, sexuality and race (Baglieri and Knopf 2004). Moreover, it involves challenging a de facto scheme of social exclusion created by a diminishing welfare state and the provision of fewer resources for supporting people with disabilities (Baker 2004).
... Many aspects of [neurodiversity] effectively articulate a nascent feminist agenda and contribute to the antinormalizing efforts of feminists supporting diverse causes such as the rights of intersexed persons, support for alternative family forms, and genetic diversity.

On their own, in other words, the normalization strategies might make it easier for disabled people (or women) to meet the standards applied to able ones (or men), but they'll never entirely erase the gap, or do anything about the fact that people with such widely varying circumstances are asked to conform to a single standard in the first place.

Another area I see feminism and disability-rights perspectives reinforcing each other is on the question of caregiving. This might not seem like an obvious choice, since you often see feminists and disabled self-advocates at odds over this issue: when disabled people assert our right to adequate care in our own homes (or wherever we choose), feminists argue that we are also claiming entitlement to the underpaid or unpaid labor of women. (See the feminist blogswarm over Ashley X for ample evidence of this conflict).

But when you think about it, modern industrial capitalist society's way of dealing with children, disabled people, elderly adults and every other group that needs help with daily tasks is exactly what you'd expect from a society in which women are invisible second-class citizens. When women are not valued as highly as men, women's work is not regarded as real work, and obligations that fall under the umbrella of "women's work" (say, care for the old, the sick and the disabled) will be more likely to be dismissed as "family responsibilities" in which government meddling is unwarranted.

Making society more inclusive, therefore, means not only eliminating the barriers that keep marginalized people from participating fully in society, but also allowing for a far greater range of available lifestyles. As it stands, the options for attaining housing form a continuum between complete independence (i.e., renting or buying a home of your own, and living in it by yourself) and complete dependence and lack of agency (i.e., living in an institution or group home), with a range of options (in-home care, living with relatives, etc.) in between. I do not think any of these options should be abolished --- with the possible exception of institutionalization --- but I would like to see other kinds of choices added to the list. What about cohousing projects tailored to certain groups' needs? What about neighborhoods that are more like extended families or groups of friends than strangers who just happen to live near each other? I can't come up with many examples offhand, but the kinds of supported-housing options I'd want to see are more relational and egalitarian than institutional. As it is, the relationship between the nonfamily caregiver and her client is a very impersonal one; the caregiver is getting paid (not much) to do certain things, and she has very little incentive to go beyond those duties. It's also a hierarchical relationship, in which the caregiver has power over the client and can make (some) choices for the client, with any objection the client might voice likely to be taken as further evidence for his or her instability and need for further supervision and restraint. I think that if there were more flexibility in community planning and housing development (to take one example among many), more cooperative supported-living schemes would crop up, with groups of disabled people sharing the responsibilities of living together, with a reduced need for external care and support.

A Brief Experiment in Communal Living

As you can probably imagine, I was a little worried about whether I'd be able to adapt to life at The Farm's Ecovillage Training Center. Classes were all day long, from 6:30 AM to 6 PM, meals were shared, and we all lived together in the Eco-Hostel, sleeping in dorm-style rooms with a bunch of bunk beds and sharing one or two bathrooms. From what I've experienced previously, in high school and college, just the human contact I had from going to classes was enough to tire me out. I could not imagine being constantly around people for ten days straight.

With this kind of background, I was accordingly skeptical of my ability to stay sane in a communal setting. It turns out I needn't have worried; oddly enough, I was probably the most at peace that I'd ever been while I was at The Farm. I never experienced sensory overload, even though we were constantly doing things, and often outside, and even though I retained my hypersensitivity to visual and auditory stimuli and my inability to tune anything out. I also did not find interacting with any of the people there to be a draining experience; normally, I have to withdraw from company periodically to regain the energy I lose just being around other people. I did not have to do that there. I also did not experience paranoia or panic attacks, both of which I've been having for about five years now whenever I enter a crowded space. Finally, I did not have depressive episodes while I was there, which may not be significant given the short duration of my stay and the cyclical nature of my depression, but I arrived deep into an unusually severe "down" phase. So either the depression suddenly lifted of its own accord and did not return (not out of the question since episodes often begin out of the blue), or whatever environmental factors negated my sensory and anxiety issues also alleviated the depression.

I don't yet know why I felt so much better overall there than I ever had anywhere else, although I have a couple hypotheses. About the sensory stuff, the rural environment may be enough to explain it. Obviously, while there's as much stuff to perceive in a rural or wild environment as there is on a busy city street or in a crowded room, the stimuli are of different types and aren't as densely packed together. You don't get a huge, oppressive wave of sights and sounds breaking over you all at once, like you do entering a crowded room; you get a steady ebb and flow. The other stuff might well have lessened just because the sensory environment was more tolerable; a lot of times I find if I am at or near overload, the slightest stressor can cause me to melt down, just because I have no energy left to deal with it. I also might have fared better with the social interactions there than elsewhere because they were unusually direct: as total strangers sharing an immersive experience, we confided in each other without any of the usual preliminaries, which tend to trip me up.

I took advantage of my unusually sociable mood to answer everyone's questions about my life with autism and autism in general; it turns out there were quite a few people there who knew someone with it. There was an older man in my class who had a nephew with Asperger syndrome, who was brilliant in physics but had underperformed at his old private school because he tested poorly (mostly due to poor fine-motor skills*; he could not get the thoughts out of his head and onto paper in time). This man was accordingly very interested in how I thought and how I perceived the world, about which I told him as much as I was able to get out. There was also a man who had taught autistic children in a special-ed class, and a woman who did not mention any specific experience with autism, but who is a retired schoolteacher and also expressed a lot of interest in how I thought and how I differed from most people. (She asked me once, "Can you lie?" to which I responded after much thought, "I probably can, but it would be really hard.")

One exercise we did as a class that I found instructive was the consensus circle. I have always been a lot more successful at one-on-one interactions than any kind of group discussion (except for class discussions, where you can raise your hand). I cannot judge conversational timing, or tell the difference between a pause and the end of someone's turn to speak, and I turn my thoughts into words so slowly that I'm usually running several jumps behind the conversation in terms of what I'm ready to express. Not surprisingly, group conversations almost always leave me behind. I expected this to happen during the consensus circle, so I proposed that we discuss that: how can people with poor communication skills gain access to full participation in a group discussion? We never got around to addressing that question explicitly, but there are several methods the consensus circle uses that help lower the barriers to participation.

They include:

• explicit, agreed-upon nonverbal signals, such as "twinkling" your agreement (spreading your hands and wiggling the fingers) or steepling your fingers if you want to speak next
• use of a "talking stick" or other formal way of recognizing who is speaking
• having officers, the Facilitator and Vibes Watcher, whose duty it is to keep the discussion on track, make sure no one person dominates, make sure everyone has a say who wants one, and monitor the emotional undercurrents of the discussion and defuse any overly intense situation

Again, the dynamic at this particular session was so laid-back and welcoming that I was able to participate in group discussions without all that rigmarole, but those are ideas I could use elsewhere, if I think I am being shut out. In particular, the rule that explicit signals be used looks like a good one, and a great equalizer for autistics, who lack the body-language-reading ability that NTs take for granted.

*There is one theory, advanced by Morton Ann Gernsbacher, that the deficits in communication observed in autism are not deficits of social attachment, attention or "theory of mind," but rather arise from "executive" problems --- i.e., trouble verbalizing or acting on thoughts. The paper I link to establishes a correlation between autistic toddlers' motor skills and later speech fluency, which would support the hypothesis she put forth in a lecture at KU, that this lack of executive control explains the communication difficulties that characterize autism.