Wednesday, December 14, 2016

Anne of Green Gables my ADHD hero and role model


""I'm such an unlucky girl," mourned Anne. "I'm always getting into scrapes myself and getting my best friends--people I'd shed my heart's blood for--into them too. Can you tell me why it is so, Mrs. Lynde?" 
"It's because you're too heedless and impulsive, child, that's what. You never stop to think--whatever comes into your head to say or do you say or do it without a moment's reflection." 
"Oh, but that's the best of it," protested Anne. "Something just flashes into your mind, so exciting, and you must out with it. If you stop to think it over you spoil it all. Haven't you never felt that yourself, Mrs. Lynde?"

Monday, November 7, 2016

I write to remind you all about Stony Brook’s PhD Program in Health and Rehabilitation Sciences as we have a Disability Studies track in this program that may be of interest to you, colleagues, students, and friends. Our program is a small one that offers students extensive mentorship, the opportunity to do tailored individual reading courses, and it also offers students financial support for at least their first two years. We have been working with other faculty across campus to create a network of interested and involved faculty: we have colleagues in Women’s and Gender Studies, Cultural Analysis and Theory, English, Social Welfare and Sociology, among other departments/programs, who are also affiliated with our program. We have a newly approved graduate certificate program in Disability Studies open to SBU graduate students from any program on campus. We are interested in recruiting strong students with interest in both theoretically and empirically driven projects.


You can read more about our program here (although note that the website is under construction/revision):http://healthtechnology.stonybrookmedicine.edu/programs/hrs


This year's deadlines are as follows:


November 30, 2016 midnight EST for consideration for domestic scholarships such as the Turner scholarship


January 13, 2017, midnight EST for consideration for regular admission for Fall 2017.

Wednesday, April 6, 2016

Proposed Human Subjects Language Changes: Are Physically Disabled People an Automatically and Categorically “Vulnerable Population?”

PROPOSED HUMAN SUBJECTS LANGUAGE CHANGES
Are Physically Disabled People an Automatically and Categorically
“Vulnerable Population?”
Compiled and Organized by Cassandra Evans, Stony Brook Doctoral Student, Supervised by Pamela Block, Associate Professor, Stony Brook University

“Salient Points Summary” and Bullet Points:
The proposed change to routinely place “physically disabled individuals” into the examples of “vulnerable populations” within the human research regulations cause researchers and disability advocates to take long pause.

In general, people who are identified—self-proclaimed or by community perception—as having a physical disability (or mobility, sensory or communication disability or impairment) are no more at risk for abuse in participating in non-medical research than non-disabled people. Therefore, they should not be automatically considered vulnerable.  A more productive approach would be to consider those individuals as “at-risk” or vulnerable if they cannot easily consent or might be manipulated or coerced, as in the case of children, prisoners or some cognitively disabled.

There is little in “physical disability” (or mobility, sensory, or communication disability or impairment) that makes an individual particularly vulnerable.  Legislation like the Americans with Disabilities Act (ADA) works to lessen the barriers that prevent participation in all life activities, and the very basis of ADA work is that there is nothing inherently vulnerable in physical disability (or mobility, sensory or communication disability or impairment). When laws recognize individuals with disabilities as fully participating citizens, they can be empowered to live full and rich lives. Language change that casts people as “vulnerable” or “weak” based on disability or impairment traces a step backward—a way of affirming negativity and stigma when the law and many aspects of society have moved on from this and no longer regards individuals with disabilities as liabilities.

That fight is still to be won for people with some disabilities and impairments, and for poor people in general, but the end result is still the same: lack of resources and information makes people vulnerable, rarely their particular physical, sensory or mental disability. Therefore, it is counterproductive to class “people with physical disabilities” as inherently vulnerable or susceptible to unethical research. 

The following represents shared philosophies on how to consider a world where all people have intrinsic value they can share:

v Research must consider individual vulnerability, consent procedures, and overall research protocols in the context of the individual’s daily sociocultural context and with the application of best practices for personal assistance services, augmentative and alternative communication (AAC), and other possible support that meet or exceed the individual’s usual experience.

v The intent to protect certain populations, who are more likely to be harmed (physically or mentally), as research participants by ensuring particular access and accommodations are part of the proper methods and practices in any research study.  A physically disabled person’s (or someone with a mobility, sensory or communication disability or impairment) ability to understand and participate in a research study is not impacted by their disability, nor are they more susceptible to any more harm than the average, non-disabled person, unless they have co-occurring disabilities like intellectual disabilities, in which case, is a separate issue.

v Diagnoses or global categories tell us almost nothing about individual vulnerability or ability to consent.

v Lumping children and “people with physical disabilities: together in one umbrella category of “vulnerable populations” is ignoring the particular nuances of each population and suggesting that they have the same needs and concerns, which they have not.

v If researchers are concerned about vulnerability to misrepresentation, then a community-level harm is at stake—not an individual harm to the person with a physical disability. 

v “Physical” versus non-physical disabilities are not useful binaries. Additionally, physical disability is not a helpful category; it can be confused with mobility impairment.  Neither term captures the nuances of sensory or communication disability or impairments either.  In any case, physical disabilities and mobility impairments are typically visible to the eye, so stigmatization, stereotyping, prejudice, and misrepresentation are more immediate.  However, this discrimination does not automatically and categorically predispose an individual to “harm” from research or unethical research.

v Many physical disabilities are not visible to the untrained eye:  sensory impairment, autoimmune disorders, seizure disorders and stroke are important examples in this regard.  Similarly the term "cognitive disorders" could include traumatic brain injury, learning disabilities, and intellectual disabilities, but not every individual in this group would be considered vulnerable to harm by research.

v Being physically, sensory, communicative, or mentally disabled can subject some people to vulnerability if they are not provided the same degree of access to resources, employment and education to which the rest of the population is.  However, that does not mean they are necessarily vulnerable.  This has nothing to do with the persons themselves, but rather to the environment and the imposition it places upon people with physical disabilities.

v Categorizing an entire group of individuals—those with “physical disabilities”—into a group of “vulnerable” can also be in and of itself an act of demoralization and infantilization.  Traditionally examples of groups that need protective care have been pregnant women, children and prisoners (those who had a history of risk for abuse and potential harm), but this caution is mainly warranted in biomedical research fields.

v The focus on "ability to consent" and "power to resist manipulation" is the most helpful dividing line, not disability or impairment categories. Consent and autonomy are the most important criteria, and using familiar disability labels/categories would needlessly exclude human subjects (and reduce the chance for research on disabled people).

         
List of Contributors:
Pamela Block, Stony Brook University
Allison Carey, Shippensburg University
Cassandra Evans, Stony Brook University
Lakshmi Fjord, University of Virginia
Elaine Gerber, Montclair State University
Wendy Harbour, Association on Higher Education and Disability
Allison Hitt
Jesse Kaysen, Civic Activist & Independent Scholar, Madison, Wisconsin
Devva Kasnitz, City University of New York
Petra Kuppers, University of Michigan
Cara Liebowitz, City University of New York
Caesar Morales
Mike Morrissey, Texas Tech University
Arielle Silverman, University of Washington
Amy Smith, City University of New York
Phil Smith, Eastern Michigan University
Magda Szaboda, Lancaster University and the Polish Academy of Sciences, Disabled Women’s Association (ONE).



Saturday, January 23, 2016

My letter to Slate about the Auerbach article

Dear Slate Editorial Team,
I was interviewed by reporter David Auerbach on October 18th for an article for Slate Magazine. In an email exchange on that date I wrote "I'm not an expert. I'm the sister of an FC user." In Auerbach's slate article, he mentioned me in a single sentence in which there are 3 egregious errors. Here is the sentence: (begin quote) As FC facilitator and advocate Pamela Block told me, “There are a lot of people very loudly detracting but a lot of people very quietly implementing it in schools,” including in New Hampshire, Maryland, Oregon, and Mississippi. (end quote)
  • Error #1: I am not an have never been an FC facilitator. I have never received training and have no experience with the technique other than watching my sister use it. I suppose I am an advocate and I suppose I am also grateful that he does not give my university affiliation.


  • Error #2: He quotes me out of context. One of my OT students did tell me in class that she sees AAC (not specifically just FC but including FC) being regularly implemented in schools. I am not sure I or my student should be considered experts however as I personally have no experience or first hand knowledge of what is going on in schools and my student was...well a student.


  • Error #3: And then the rest of the sentence mentions "New Hampshire, Maryland, Oregon and Mississippi." These are not states that I ever mentioned. I know nothing about what is going on in those state, yet the sentence implies that I am giving Auerbach information about those states.
These errors were not central to the arguments that Auerbach makes in his article. They are just careless sloppy errors but I believe they are indicative of the shoddy stream of distorted misinformation that is present throughout the entire article, including many of his key points. I know others have addressed the core central errors, but I wanted to focus on the single sentence where I am mentioned because it implicates not just Auerbach but also Slate's lack of fact checking. Clearly I cannot trust the information Slate provides me. Slate is apparently not a trustworthy source of information.
Slate, is this an article and a type of journalism that you stand behind? How will you respond to the very reasonable calls for revision or retraction? Slate, I know you can do better.





Saturday, November 14, 2015

My response to the Slate Article

Three frustrating things for me about the Slate article "Facilitated Communication is a Cult that Won't Die" by David Auerbach:

First, when interviewed, I offered to connect him to Hope and he declined, saying he didn't have the time or resources (um, Skype?). I don't think he bothered to even meet any people who used FC. 


The second frustration is that, given his computer tech background, I spent a good deal of the interview talking about brain-computer interface, which I do think may ultimately render this debate moot, or maybe just complexify it further, but at least provide another avenue for communication access. No mention in the article.


The third frustration is that he has an autistic brother, who happens to be able to speak, and I asked: "Didn't he notice times when his brother lost his words?" He acknowledged there were communication differences. I hope his brother gives him hell for that sloppy, sensationalist article.


Of course, all the errors, misattributions, misinformation and half-truths didn't help either. As friends have told me, he had his story before starting to interview and simply ignored whatever conflicted with his agenda.