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.



Wednesday, October 21, 2015

Hope and Jacob on Autism, Dating and Intimacy


Hope and Jacob on Autism, Dating and Intimacy
Pamela Block, Russell Shuttleworth, Hope Block, Jacob Pratt and Linda Rammler

This was presented at the 2011 Disability Studies Symposium, Instituto de Medicina Social, UERJ, Rio de Janeiro, May 24, 2011 and subsequently published as part of a book chapter: Block, P., Shuttleworth, R. Pratt, J., Block, H., Rammler, L. (2012) Disability, Sexuality and Intimacy. IN Politics of Occupation-Centered Practice: Reflections on Occupational Engagement Across Cultures. (Eds. Pollard, N., Sakellariou, D.). Oxford, England: Elsevier Churchill Livingstone

Hope and Jacob
Hope Block and Jacob Pratt are both autistic adults who met while presenting at regional and national disability conferences. Both communicate through a form of alternative and augmentative communication that is referred to in the literature as facilitated communication (FC) or supported typing. This technique involves the need for some level of physical contact between the person typing and another supporting individual to assist with motor planning and initiation difficulties. The technologies involved for this communication style can be as simple as a letter board (which Jacob often uses) and as complex as a text to speech device (which is Hope’s preferred method).
When Hope types, her wrist, arm or elbow is in physical contact with the person helping her. It is not her preferred means to communicate when easier strategies will suffice, such as body language, vocalizations and personal signs. You can learn more about Hope and her communication strategy by visiting: http://www.aina-ri.org/movies/HopeB.htm, (Block, 2011). Despite a nerve-wracking fear of a new audience's disbelief, it is in public performance spaces, such as during conference presentations, where she is best able to communicate by typing. She states: I don’t see things like ordinary people and it feels like I’m out of sync with the rest of the world. I am thought of as not very smart but I am very intelligent. I am awesome at presenting at conferences, but have trouble with conversations. I don’t know why that is. It is odd that I have so much trouble talking to people one to one. Please realize that it is me typing not my mom. I cannot type yet without support. I am perfectly capable of my own thoughts.
Unlike Hope, Jacob has a lot of oral language that is primarily nonfunctional. No often means yes and vice versa. When anxious, verbal diarrhea in the form of repetitive but “stupid” (Jacob’s own term) questions abound, like 'tomorrow is Sunday?' when he knows perfectly well it is not. Jacob is also echolalic, repeating the last thing he has heard or something he was forced to repeat years ago in a speech therapy program emphasizing oral language. None of this reflects anything at all about the myriad of thoughts swirling around his brain - thoughts both emotionally complex and vocabulary rich. To know this aspect of Jacob requires that he have access to the alphabet in either low or high tech QWERTY (standard keyboard layout) form with facilitation.
This facilitation involves skilled support for Jacob to be comfortable, because for so long he was viewed as someone who was incompetent intellectually. Feedback also needs to be given to him about continuing to look at the board and to keep going if he gets stuck mid-word or mid-sentence. Although Jacob prefers to have his hand tightly grasped to provide proprioceptive input, he is capable of isolating his own index finger, crossing midline, hitting a letter target accurately, and performing many of the other skills required for supported typing with a hand tourniquetting his shirt above the elbow. He corrects misspellings with his non-typing hand, too.
Jacob states: Without FC I would be a lost soul. I yearn to be able to type with anyone so everyone can know the depth of my thinking, my spirituality, my feelings, my understanding, and so many other sides of my complex self that one can't possibly know without typing with me. Typing does not change the fact that I am and will always be autistic, and that because of the severity of my autism, I will always flunk the standardized tests that lead me to be eligible for services provided only to those with an intellectual disability. Nonetheless, my inability to pass those tests has to do with performance barriers – the same ones that make fluent and meaningful oral language impossible.
Eventually Hope and Jacob discovered they had feelings for each other. They began dating in late 2009 and became engaged in May 2010. Their first date consisted of sitting without support at a table in an exhibit hall at a conference and just ‘being.’ On their next date, in early January of 2010, Hope’s staff enthusiastically began suggesting things they could do in the area, since Hope lives in one state and Jacob in a neighboring one. Hope typed: “Why do you neurotypical people always have to do something? Why can’t you just be?” 
This may be a good time to note that in the occupation of sexuality and relationships, intimacy may look very different to people who have various forms of differences in their learning or bodies that lead them to diagnoses of disabilities. As another example, Bob Williams (poet, disability rights advocate, and former Deputy Assistant Secretary for Disability, Aging and Long Term Care Policy and Commissioner of the federal Administration on Developmental Disabilities in the Office for Planning and Evaluation in the U.S. Department of Health and Human Services under the Clinton administration), wrote a poem about two people in love in an institution. They silently prayed each day that, when staff laid them on their sides on a mat, they would be positioned so they could face each other and let their eyes speak of their loves for one another. This IS intimacy although not, perhaps, in the way traditionally defined.
Because of communication and logistical challenges, dating for Jacob and Hope is complicated. They live several hours drive apart from each other in different states, so it is a distance relationship. Even with the support of family members and service-providing agencies, they do not get to see each other as often as they would like.
Hope
Love presides and stays alive, forever. It really speaks your heart. Without support I would never see my awesome but noisy, respectfully, handsomely, brilliant, kind and funny Jacob Pratt. Very necessary to be with my love…Somehow, somewhere, some way. Pretty wallflower finally has her dream. This is great…I am thankful for this chance. Need less reason and some awesomeness.
I love being engaged but I wish we could get married soon. It is so hard to be apart. I have another wish. Really want to just be understanding about Jacob’s need to get his [undergraduate] degree first. I am so impatient. First we need a place to live and figure out the funding. We need help with [my and Pam’s] father being so worried, and mom bringing me all the time to meet Jacob. It is hard for mom to drive long distances. It is weird to have your mother on dates. We can’t find people to type with both of us except Linda and she is so busy. I want so much to be a wife and be with my love always. Being engaged is fun but being together as man and wife would be so much better. Really hard to be so far apart. We love each other so much and wish it weren’t so hard to figure things out.
Jacob
I can’t believe I finally found love. I am experiencing all new feelings that others have spoken about but I could only imagine. Shakespeare, the bible, modern day poets, all have written about this wonderful thing called love. They understated the feelings. I can’t use words to describe the awesome and overwhelming feelings that overcome my mind and heart and soul but, believe me, this is the way I imagine HEAVEN WOULD BE LIKE. THE ONLY DIFFERENCE IS THAT LOVE IS GOD’S GRACE AND NOT THE SAME AS LOVING ANOTHER MORTAL IN WHOM THE HOLY SPIRIT LIVES. I am so blessed that love is in my life.
Supported dating is wonderful but it also sucks. The way it is wonderful is we have staff who are cool about our dating and our parents are too. Kind of like having approval for having a friend who your family accepts as one of its members. It allows us to see each other, because neither of us can drive or use the phone to arrange dates or even get ourselves to where we want to be. Supported dating in an ideal world wouldn’t be necessary, but when you have severe movement, anxiety, communication and sensory differences (Rammler 2007) resulting in a label of autism it is the only option for us to have the opportunity to be together.
Supported dating sucks because you are totally dependent on others to be together. Self-determination can only go so far before reality strikes. Reality includes staff thinking it is okay to cancel, or run late, or break up your plans to suit themselves. There is not a thing you can do except get frustrated, and take it out on yourself through self-inflicted pain inducing bites or head bangs, because if you don’t do it to yourself you will be called aggressive and punished for being so deeply disappointed that your heart is breaking, but the outcome is worse because the punishment is another postponement.
Read Linda’s respectful rules (abbreviated as an appendix). It is important for anyone providing supported dating supports to realize it’s hard enough, and not make it worse by imposing their agenda on us. I wish everyone love and if you have severe autism I wish you the chance to fall and be in love. And I pray you will have the supports you need to get to where you want to be in your relationship with that special someone.
Final Thoughts
At the moment, intimacy for both Hope and Jacob involves facilitated communication to let each other know how much they love each other and why. They also discuss their futures, their current lives (e.g., college courses both took recently) and, like any other couple, may complain to each other (e.g., about the slowness of a wait unit in a restaurant). Neither has expressed any interest in physical contact except for an occasional kiss on the cheek or hug. They often choose to sit near but not next to each other. Yet, as they communicate from their hearts, it is challenging for those supporting them to “be a fly on the wall” and to rise above feeling like a voyeur so as not to convey personal discomfort to Hope and Jacob that may limit their freedom of expression. Without support from others, such communication on their parts would be impossible. Thus their situation highlights the realities of facilitated sexuality as discussed earlier. Though the facilitation that Hope and Jacob require is, at present, on the level of logistical planning, transportation and communication, rather than sexual activities, it is already a delicate negotiation that redefines traditional notions of intimacy.
            Greater levels of intimacy, particularly in the sexual arena, comprise bridges that both Hope and Jacob, their families, and other members of their support teams may have to cross eventually. It will be important for others involved in their lives to do so nonjudgmentally and in full support of what Jacob and Hope, as the involved couple, want. Resources such as Dave Hingsburger’s (1990) I Contact: Sexuality and People with Developmental Disabilities may prove to be required reading for all concerned.
            Another issue that has arisen is how soon Hope and Jacob actually may be married. If Jacob’s religious orientation allowed it, he may well be amenable to living with Hope as though they were married. This would render the politics of interstate funding, reduced Social Security benefits  to married couples, and other systemic logistics unnecessary. Unfortunately for Hope, Jacob believes to do so would dishonor her. Therefore, he intends, as one of his independent study projects while he earns his Baccalaureate degree, to take on the system. In contrast, Hope’s eagerness for the two of them to be together, and her personal lack of religious prohibitions, creates another level of negotiation for the couple. The take-home lesson here is that other issues beyond disability (e.g., personal values, life plans, preferences) can also intrude on sexuality and intimacy among disabled people as much as these issues impact individuals who are not disabled.
            On top of negotiating practical, logistical, financial, and religious barriers, Hope and Jacob must face prejudice, discrimination, pejorative attitudes and behavior in ignorant people in the community. Recently, as Jacob and Hope sat on a bench in a mall on a date – their facilitators dismissed and watching at a distance – they had the displeasure to hear a nearby man talking on his cell phone, passionately expounded that, “leaving two retards alone together should be illegal.” This sort of hurtful encounter may turn out the hardest of all barriers to dismiss or overcome.
            Occupational therapists are well qualified, and in most cases, well-disposed to help people to negotiate this challenging terrain. It is the responsibility of educators to ensure that students receive a balanced and thorough preparation that goes beyond the physiological aspects of sex to explore emotional and cultural issues that influence the occupations of sex, sexuality and intimacy. We strongly suggest that research and scholarship engaging with these topics include the perspectives and active participation of disabled people. Hope and Jacob’s experiences reveal how necessary it is to consider individual perspectives, backgrounds and desires with regard to these occupations. There are no simple answers, no cookie-cutter solutions; each situation must be approached with equal measures of respect, empathy, and creativity. On the level of policy and practice, especially in institutional settings or in helping individuals negotiate with their families, occupational therapists have the potential to play a valuable role as advocates and facilitators to help ensure occupational justice -- that the rights, needs, and desires of disabled people are represented and respected. In some cases, it might be necessary to fight entrenched and repressive attitudes and policies that are decades old, if not older.  Ignorance and prejudice, such as Hope and Jacob experienced at the mall, is perhaps the hardest to address and change of all the barriers discussed here. What cultural and policy changes must take place, and what roles should occupational therapists play, in order to work toward occupational justice in this realm, and a world where such experiences no longer happen? These are the questions we should be asking our students, our authority figures, and ourselves.
Appendix
Following is an abbreviated version of the “support staff training guidelines” used to instruct primarily Jacob’s staff on how to support his dating. Oftentimes, dates involve family members because the logistics of coordination given other assignments, scheduled work hours, and a myriad of other factors. Another individual with a disability who is able to travel independently may accompany Hope in the near future as the “lovebirds” take the Shoreline train to meet each other at a midway point. Fortunately, both Hope and Jacob love trains and this line is reasonably accessible to both of them.
Supported Dating
Individualized for Jacob and Hope
ALWAYS REVIEW THE ENTIRE CONTENTS UNTIL SUPPORTED DATING IS WELL-ESTABLISHED
Important numbers to have:
JACOB’s contact information
HOPE’s contact information
NOTE: Both Jacob and Hope have facebook pages. They can “live chat” or send each other messages that way, too.
Planning
  • Suggest dates/times that are mutually convenient for Jacob, Hope, and whoever is available to support each of them.
  • Make sure Hope and/or Jacob don’t have other commitments. (Ask them first, then check their calendars with them.)
  • If either does have something else scheduled, let that person choose whether to maintain the commitment or see each other instead.
    • If they choose to see each other anyway, continue. This may require:
      • Notifying whatever entity was expecting either one of them to reschedule, let them know s/he won’t be there, etc. The responsibility for Jacob’s cancellations falls on Jacob’s support staff or others and the responsibility for Hope’s falls on her staff/others.
      • Making sure other members of each team know of the change.
    • If one chooses not to see other and do whatever was originally planned instead, pick another date with each of them. Start this process over. (NOTE: Try to negotiate with them if the event to be missed affects health, safety, or other important life functions. Even if it does, it is still their choice.)
  • Ask them what they want to do on the date. Use facilitated communication. They may have already communicated with each other about what they’d like to do, have new ideas, or be responsive to suggestions you offer. Support their negotiations as they jointly decide what to do. (In reality, it is often Jacob who makes the recommendation and Hope who agrees! Dates are often planned via emails.)
  • Review the specific steps for planning dates at specific times.
    It is NOT up to staff to make decisions based on what they want to do. We are all here to support Hope and Jacob lead their lives as they choose!
    Additional planning for late afternoon (after 3 p.m.), evening, weekend dates
    NOTE: It is really far to Hope’s place but late afternoon, evening and/or weekend dates should still be planned if that is what Jacob and Hope want.
  • Allow enough time for Hope and Jacob with their respective support to get to the meeting place before setting a meeting time.
  • Both Hope and Jacob need rides back home so, given the distance, it is usually best to plan on both sets of support staffs to stick around. In fact, double or triple dates work well!
  • Confirm the date, time and place right before the actual date. Do this the night before or morning. (Note that Hope’s home support staff members do not work during the day all the time.)
    • Make sure all support staff who will be involved in supporting the date have each others’ phone number in case either Hope or Jacob are sick or there is another compelling reason to reschedule.
    • Compelling reasons to reschedule include serious weather, serious staff illness, lack of transportation at the last minute (e.g., breakdowns, accidents).
      Set dates are NEVER to be canceled/rescheduled for the convenience of staff.
      Support on dates
      Bring extra money just in case Jacob or Hope do not have enough. Get a receipt so you can be reimbursed. Make sure you have enough gas in your vehicle before the date. It will be okay to stop and get gas on your way back home with Jacob as long as you tell him you have to do this.
      Remember what Hope said as this is paraphrased: “You neurotypical people have a need to do whereas we autistic people are okay to be.”
      Remember, it is THEIR date, not yours!!!
  • Bring Jacob’s letterboard and Lightwriter with the plug. Make sure Hope has her Dynavox. Both of them can type on a letterboard so bring a back up just in case.
  • Bring something for each of them to use for proprioceptive input.
  • Let Hope and Jacob change plans at the last second if they want. Use facilitated communication.
  • Avoid traffic if at all possible while going on the date.
  • Don’t rush.
  • Allow them to choose their seats. Allow them to change their minds about where they’re sitting. Remember that what Jacob says may be unreliable so ALWAYS use facilitated communication to confirm.
  • If you are there with your significant other, confirm with Hope and Jacob whether they want you to sit with them or if they’d rather sit by themselves.
  • Be available to facilitate their communication, however.
  • If you are at a restaurant or another place where Hope and Jacob need to communicate with other staff, ask if either of them want assistance ordering and how they would like that assistance to be provided. Follow their instructions. You work for them!
  • Be ready to support any other issues that may arise (e.g., by explaining noises, movement differences, anxiety, sensory needs) to others nearby.
  • Hope and Jacob have a right to be anywhere in public. They do not have a right to disrupt others’ peaceful access to those places and, if either one continues to do so, it may be appropriate to leave (at least for a sensory break).
  • There is a fine line between honoring Jacob’s and Hope’s right to be present with their autism and them truly disrupting others’ rights. Here are some guidelines to help you decide:
    • If it is merely a case of someone else being judgmental, remember Hope’s and Jacob’s right to be there. It is okay to point this out gently.
    • If someone actually says something rude to them or you, tell them you’re sorry they were “bothered” and ignore them.
    • If someone has been interrupted or annoyed, apologize in addition to Jacob’s verbal apology (one of his aspects of perseverative speech is to say “I sorry” if he perceives someone to be upset with him) and explain briefly what autism is. Try to help the person understand that this is not intentional.
    • If someone has been hit or otherwise aggressed against, make sure they are okay. Be prepared to exchange information unless the person is certain that everything is okay.
    • If the environment is too noisy, at least take a sensory break. This is reason to leave if Hope and Jacob want to.
    • Treat other incidents (e.g., spilled glass of water, spilled popcorn, need to use the restroom, or other events) as you would for anyone else. Deal with it!
    • Leave if Jacob or Hope want to leave. Don’t drag it out “just because the date isn’t supposed to be over.”
  • In a really difficult situation involving authority figures, feel free to call another member of Jacob’s or Hope’s team for advice.
  • If Jacob and Hope want to extend their date, and it is possible to do so, go ahead. Just make sure everyone else knows so they are not “missing!”
  • If it is not possible, negotiate with them about why not and what to do instead. Use facilitated communication.
HAVE FUN!!!!

Monday, October 19, 2015

More info on New Jersey Eugenics-Era Law


Journalist Daniel Engber sent me the following information regarding the eugenics-era language of the NJ law.

 Start quote:

 "The legislature voted to update the language of the statute, effective March 2012, to strike the phrase “mentally defective.” But they went on to amend the statute so that it covers victims who “had a mental disease or defect” at the time of the sexual encounter.

It’s also the case that the New Jersey Law Revision Commission is (or was) working on an overhaul of the laws on sexual offenses, which would include greater protections for the sexual rights of people with disabilities.  Here’s a passage from a 2013 report:

With regard to the section relating to sexual offenses against individuals who have temporary or permanent intellectual or development disabilities, the Report attempts to integrate the New Jersey Supreme Court’s decision in State v. Olivio, 123 N.J. 550 (1991)interpreting the existing statute to ensure that such individuals’ rights to pursue a normal consensual sex life were protected along with their rights not to be the victims of sexual assault or unwanted sexual contact. The proposed language contained in this version of the Report is intended to incorporate the concerns addressed by the Court in Olivio as well as concerns raised by the commenters to earlier drafts.
 A 2012 report from the same commission proposed making the crime that Anna was convicted of no longer “aggravated,” which would have had major implications for her coming sentence. 

Here’s another passage from the Commission:

At the March 2012 meeting, the Commission questioned whether New Jersey’s current statute allows people with intellectual and developmental disabilities to engage in sexual relations.  In response, Staff researched the statute and current case law.  Effective March 17, 2012, the Legislature deleted section h. of N.J.S. 2C:14-1 (definitions), which defined “mentally defective” as a “condition in which a person suffers from a mental disease or defect which renders that person temporarily or permanently incapable of understanding the nature of his conduct, including, but not limited to, being incapable of providing consent,” and deleted “mentally defective” from N.J.S. 2C:14-2a(7) as a circumstance where an actor may be guilty of aggravated sexual assault. 2011 N.J. Laws 232.  However, the Legislature also added language to section 2a(7) making sexual penetration with another person aggravated sexual assault if “the actor knew or should have known [the victim] had a mental disease or defect which rendered the victim temporarily or permanently incapable of understanding the nature of his conduct, including, but not limited to, being incapable of providing consent. 
End quote.
 Thank you Daniel for sharing this important supplemental information.