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!!!!

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.

Bus Rides and Back Rooms: Autism, Family, Meaningful Occupation & Life Transition

Bus Rides and Back Rooms:

Autism, Family, Meaningful Occupation & Life Transition

Pamela Block, Hope Block and Barbara Kilcup

Society for Applied Anthropology Meetings, Santa Fe, New Mexico, March 19, 2009.

Hope Block, my sister and co-author of this paper used to ride the bus several hours each day to get to school. No, we didn’t live in rural Alaska, we lived in Southern Rhode Island within a few miles from our local public schools. From the early 1970s until the late 1980s, Hope was bussed to a private, segregated, Easter Seals-funded special education facility in East Providence, Rhode Island, called Meeting Street School. Even if traveling directly from our house to the school, the ride would have been somewhere close to an hour in length. However, after picking up my sister first, the driver of the small-bus weaved through neighborhoods throughout Southern and Central Rhode Island picking up other children and arriving at the school after somewhere in excess of two hours of driving. As Hope says, “It was a lot of wasted time.” At the time, Hope had no way of telling us she was spending so many hours on the bus. We found out, because the school hosted “siblings” days every summer and on those days my younger sister and I joined Hope on the bus. At some point we complained about the length of time on the bus and our parents asked the bus driver about it. She told them that since Hope was the quietest, she tended to pick her up first and drop her off last. I believe after our parents’ inquiry that the bus routes were adjusted and Hope had a faster trip. I suppose 2 hours a day is better than 4 hours per day of rush-hour travel on the bus, but still quite a strain on her. To this day she has very low tolerance for traveling when there is any kind of interruption or congested traffic.

I mention this because my own time on a school bus during this same period was probably about a total 30-40 minutes a day. Except under extraordinary circumstances, the daily bussing of a disabled child to a remote location is less common nowadays. Children tend, if not to attend the closest public school, at least to a school in the same district. Opportunities exist, even if limited, for inclusion in typical classrooms and interaction with typical students. Our mother and co-author, Barbara Kilcup, worked as a special education teacher in Newport Public Schools 1975-1998, switching to teaching kindergarten from 1998-2003. In the time between sending her own disabled child to a segregated school in 1970, and hosting disabled children in her typical kindergarten class more than 30 years later, Barbara witnessed a profound change in the educational opportunities available to disabled children. Although Barbara’s special education classes were officially self-contained, she always advocated for what was then called “mainstreaming” and slowly changed her position to that of a support and resource for students who were increasingly placed in regular classrooms, for at least part of the day. In fact, her switch from special education teacher to kindergarten teacher took place when she was told her contained classroom was being closed, and she was to transfer to another school. Rather than accept this move, she opted to become a kindergarten teacher in a school of her choice that practiced total inclusion and allowed her to advocate for disabled students from the other side of the fence.

Segregated or not, in 1970, Barbara was lucky to have a place willing to educate Hope for free. Publicly funded education of disabled children was not mandated until 1974. Hope was referred to Meeting Street School at age 3 where she received early intervention and schooling. Her motor planning difficulties were perceived to be the result of visual impairment. At first she was placed in the so-called deaf-blind unit. During these years, she was evaluated by Children’s Hospitals in Philadelphia and Boston. She was diagnosed as having mild to moderate mental retardation with autistic tendencies. According to Grinker (2007), it was common in the 1960s for parents to be told that their children had mental retardation, rather than autism. At the time so little was known about autism that mental retardation was seen as a less stigmatizing label. Children with mental retardation could be “trainable” or even “educable.” For autistic children prior to the 1980s there was no such expectation. Hope never developed the ability to speak because of her motor planning problems.  She never could articulate more than a few sounds. Meeting Street School was the best place available at the time.  Barbara says the programs that they offered, particularly for parents, prepared her and other parents to be advocates for their children.

Sibling days at Meeting Street School were a great deal of fun. For part of the day we got to meet other siblings to share stories and peer support. We participated in disability awareness exercises. They were the classics that disability rights activists groan about today: walking with a blindfold and picking things with socks on our hands. For part of the day we followed Hope to some of her classes and therapies. We played with the big balls and climbed a little stairway in the therapy room. One year Hope’s class performed Romeo and Juliet for us. Hope was Juliet’s nurse. One of the days was always devoted to some fun community-based activity outside the school – usually an amusement park. I remember leaving with a positive impression of Hope’s school. Her teachers and therapists seemed young, super nice and appeared to genuinely care about her. To this day people sometimes walk up to us and re-introduce themselves as a former teacher or therapist. There even seemed to be a sort of early version of disability pride and self advocacy. Certainly it was a place where you could be comfortable having physical differences, though maybe I’m over romanticizing. One down side was the bus ride.

Another was that Hope never had a formal reading program.  An attempt was made to teach her sign language, but because of her motor planning issues, this was unsuccessful.  Various communication boards were tried and were helpful. We also tried a few augmentative devices, which she eventually stopped using, either because they were complicated to use or were easily broken. Despite the lack of focus on literacy, I remember that Hope was always fascinated with alphabet books, credits at the end of movies and our Speak-n-Spell electronic game. I remember that computer voice saying “That is correct” and wondering what word she got right. At the time I did not believe her capable of literacy and wondered how she could get a word right without it being written out for her to see and copy. I know better now, but at the time I joined the rest of my family in believing her official diagnosis of mental retardation, and did not think her capable of literacy. In any case, Hope’s school recognized her as being pretty smart, even if her family did not. I remember their frustration when their communication strategies did not translate outside of school contexts. For whatever reason, they did not succeed in helping her find a communication style that would allow her to share complex thoughts. I think they blamed us for not consistently applying their communication strategies, which we (or at least us kids) never understood very well. I think Barbara was as frustrated as the school therapists, but the rest of us merely used Hope’s lack of complex communication to confirm our own preconceptions about her capacity to think and communicate. In 1988, when she turned 21 she “graduated” to a sheltered workshop less than 15 minutes from our mother’s house. At least the long bus rides were over.

Away at college, in the midst of my own life transitions, I was out of the loop, but Hope and Barbara were not at all happy with the sheltered workshop. Hope did not complain, but the tasks she was given were boring and repetitive. She put items like soap or screws into little boxes or bags. She had an allergic reaction to the soap. She brought home paychecks that were a fraction of minimum wage. In the sheltered workshop, the workers, (the so-called “clients”) that could talk well and read were at the top of the hierarchy. Those with no literacy and no ability to speak were at the bottom. So Hope was considered among the lowest functioning workers by both the staff and the other workers. Hope states, “[it] was awful. I hated the place. I was always treated like a stupid person and poorly.” As Barbara tried with increasing frustration to get the staff to see things differently and offer more varied options, the staff responded by moving Hope to the so-called “back room” where people who did not fit the mould were gathered (in other words, the people classified as behavior problems or incapable of self care and/or meaningful communication and occupation). Barbara was told this would allow Hope to receive more “individualized” treatment. Barbara hit the roof.

At around this time an early pilot Medicaid waiver program was offered, called Community Supported Living Arrangements (CSLA). Barbara and Hope worked with an advocacy organization called PAL (Parents for Alternate Living) to apply for this funding. Some people applied for homes, Hope applied for the chance to engage in meaningful occupations. She wanted to work and play in the community and leave the institutional setting of the sheltered workshop. Aaround 1992, she got the funding, switched to an innovative community-based service provider, and eventually was able to leave the sheltered workshop. For the first time since she was three years old, Hope no longer spent her days in an institutional setting. One of the consultants or administrators for the CSLA suggested that Hope try facilitated communication, a controversial form of supported typing that slowly allowed Hope to gain the ability to share complex thoughts. I do not have time to go into detail about this controversy here, but provide a thorough discussion in our 2008 paper (Block, Block & Kilcup 2008, Biklen 2005, Kliewer et al. 2006, Rubin et al. 2001).

So, how do I render meaningful this collection of experiences from the perspectives of anthropology, disability studies and occupational science? From an anthropological perspective Lakshmi Fjord has suggested that I explore the relevance of kinship. Hope’s family played a double role of advocating for her, helping her get unstuck and rendering visible the previously unspoken and thereby invisible injustices. We had the ability to communicate and protest bus rides and back rooms, and this proved essential at key moments. Yet simultaneously, some members of Hope’s family were more conservative with regard to perceptions of intelligence, capacity to communicate, and function. We “knew” Hope. We “knew” the limits of what she was capable of, and this influenced the way she behaved with us, and the opportunities we afforded her. Her immediate family eventually came around to an understanding and belief in Hope’s capacity for complex communication. The perceptions of extended family members remain more dubious. Though Hope’s recent willingness to type at family gatherings has helped.

From a disability studies perspective, I could provide a Foucaultian analysis of how the structures of institutional power have shaped my sister’s life (Erevelles 2005, Foucault 1979, 1980, Hughes 2005, Tremaine 2005). She was classified and shunted to what was considered the appropriate institutional placements. Though not residential, she was forced to travel far from home to receive even a rudimentary education that did not prepare her for adult life in her community. Yet this formulation is incomplete, because clearly, as stated above, there existed a space for protest, advocacy and self-assertion. There were alternatives to institutional settings. Even within the institution, teachers and therapists advocated on Hope’s behalf, trying to make us see potentials for Hope that we may not otherwise have recognized. They advocated within their institution and with us for the use of technologies and techniques that stretched our perceptions and imaginings of who Hope was and who she could become.

Hope also found ways to communicate despite the lack of a speech or, seemingly, literacy. In public, she was mostly quiet, and at most used a personal sign language. With her family, she hummed. Her hums could be happy, excited, disappointed, angry, or bitterly frustrated. Different hums for different contexts. When very happy, though with increasing rarity as she got older, she would hum entire songs. Currently, she will only do this on peoples’ birthdays and only the song “Happy Birthday.” Hope also communicated through physical humor and through physical manifestations of passive-aggressive revenge on the people who annoyed her (for example, repeatedly using the toothbrush of a germ-phobic roommate). In recent years Hope communicates through less obscure means. She is at her very best when communicating in public spaces. She speaks to college students, and at professional or activist conferences and family gatherings.

From an occupational science perspective, it is natural to consider the presence and absence of meaningful occupations at different points in her life. For fifteen years of her childhood and adolescence, she probably spent more time riding the bus than any other single occupation --  at least 15-20 hours per week. As Hope says, “a lot of wasted time.” During that time, professionals and family had no need to spend time or energy on her. She was thoroughly shelved – warehoused – processed – systematized. To borrow from some dark interpretations of the anthropological concept of liminality, she spent this time in a prolonged liminal state, “betwixt and between” family and school, engaged in a meaningless, and in times of traffic congestion painfully frustrating, occupation (Deegan 1974, Murphy 1990, Murphy et al 1984, Scheer 1984, Turner 1967). A liminal state is supposed to be temporary and short lived, as is a school-bus ride -- a symbolic transition from one state to another, from family to school life. Yet for Hope, the liminal state, because of its extraordinary duration, took on an “unlife” almost more real than the rest of her life. Occupational apartheid seems a natural label for the segregated schooling (Kronenberg et al. 2005, Pollard et al. 2009). Occupational injustice seems a natural fit to describe the trajectories of dead-end occupations that Hope experienced in her years of being differently educated that lead to her ultimate placement in the “back room” of the sheltered workshop (Wilcock 2006). Yet there are other conceptualizations of liminality that also apply, for example, as a space where protest against social structures and social change was and is possible (Turner 1974, 1986; Willett & Degan 2001).

I have only seen the concepts of occupational apartheid and occupational justice applied in community-based settings. In addition to being a framework to consider new forms of practicing occupational therapy/occupational science they become a means by which occupational therapists can free themselves from the limits of working within traditional institutional settings. I know occupational therapists have played dual roles in upholding institutional structures and championing and supporting deinstitutionalization. Yet one of my colleagues once spoke bluntly to me and my students of occupational therapy’s inability to provide the support needed, in at least one specific regional and temporal context, to ensure the successful re-entry of former psychiatric inmates in the community. “We failed them” she told us, and in those words you could hear an anguish of decades-old guilt and frustration. Though the context was different, I wonder how Hope’s former occupational therapists felt seeing her and other students channeled from school into sheltered workshops – those concentrations of meaningless occupation.

My occupational therapy students go out on their fieldwork assignments and then return to me for a final course in which we place their experiences within a disability studies perspective. I help them to question the process by which institutions may have programmed them to accept routine injustices and policies that frankly violate human rights. They are encouraged not to question authority or a system that frames their therapies within the employer’s and the insurance company’s approved number of sessions and minutes per session. These are newly-minted occupational therapists, trying to understand the conflict between these structural limits and the central trope of the profession that occupational therapy is client-centered. I think, I hope, that through creative subversion, some of them learn ways to bring these conflicting forces into balance. Or perhaps they burn out and leave institutional settings for the more liberated, though less lucrative, community based opportunities. Actually, I’m not sure how liberating these mostly fee-for-service opportunities really are. At least back in the institutions, therapists had decent benefits. However, at least in this framework they have the ability to refuse an assignment.

Where do occupational therapists and occupational scientists belong in such narratives as Hope’s? At the time, I simply was not paying attention, but as far as I can tell none had a starring role either as savior or villain. What role could they have played? What role can they play for the thousands of people subjected to lives in institutional settings? Well, whatever they’ve been doing, even if not quite as strident as what disability rights activists would hope, it is at least more, on a practical level, than anthropologists have been able to offer. I have great hopes for the negotiation between the three fields as we move forward. Anthropology and disability studies providing the critical perspectives and activist threads, while, as Gelya Frank reminds us, occupational therapy/occupational science pulls us beyond thinking into doing (Block, Frank and Zemke 2008, Frank 2005).

 

References

 

Biklen, D. (2005). Autism and the Myth of the Person Alone. New York City: New York University Press.

Block, P., Block, H. and Kilcup B. (2008). Autism, communication, family and community. Unpublished manuscript presented at the American Anthropological Society, November 21, 2008. San Francisco, California.

Block, P., Frank, G. and Zemke, R. (2008). Introduction to the Special Issue: Anthropology, Occupational Therapy and Disability Studies: Collaborations and Prospects. Practicing Anthropology, 30(3):2-5.

Deegan, M. J. (1975). "The Symbolic Passage from the Living to the Dead for the Visibly Injured." International Journal of Symbology 6 (3): 1-14.

Erevelles, N. (2005). “Signs of reason: Riviere, facilitated communication and the crisis of the subject. In Shelly Tremaine (Ed.), Foucault and the Government of Disability. Ann Arbor: University of Michigan Press.

Foucault, M. (1980) The History of Sexuality. Volume I: An Introduction.  New York: Vintage Books.

Foucault, M. (1979) Discipline and Punish: The Birth of a Prison.  New York: Vintage Books.

Frank, G. (2007) Collaborating to Meet the Goals of a Native Sovereign Nation: The Tule River Tribal History Project. IN Les W. Field and Richard G. Fox, eds., Anthropology Put to Work. , pp. 65-83. Wenner-Gren International Symposium Series .   Oxford: Berg.

Grinker, R. R. (2007). Unstrange Minds: Remapping the World of Autism. Cambridge, Massachusetts: Basic Books.

Hughes, B. (2005) What can a Foucauldian analysis contribute to disability theory? IN Tremain, S. (2005). Foucault and the Government of Disability. Ann Arbor: University of Michigan Press. Pp. 78-92.

Kliewer, C., Biklen, D. & Kasa-Hendrickson, C. (2006). Who may be literate? Disability and resistance to the cultural denial of competence. American Educational Research Journal, 43(2):163-92.

Kronenberg, F., Algado, S.S. & Pollard, N. (2005) Occupational Therapy Without Borders: Learning from the Spirit of Survivors. London: Elsevier, Churchill, Livingstone.

Murphy, R. F. 1990. The Body Silent. New York: W.W. Norton.

Murphy, R. F., Scheer, J., Murphy, Y. and Mack, R. (1988). "Physical Disability and Social Liminality: A Study in the Rituals of Adversity." Social Science and Medicine 26 (2): 235-242.

Pollard N. Sakillario D., and Kronenberg, F (2009) The Political Practice of Occupational Therapy. Philadelphia, PA: Elsevier Limited.

Rubin. S., Biklen, D. Kasa-Hendrickson C., Kluth, P., Cardinal, D.N. & Broderick A. Independence, Participation, and the Meaning of Intellectual Ability. Disability and Society, 16(3): 415-29.

Tremain, S. (2005) Foucault and the Government of Disability. Ann Arbor: University of Michigan Press.

Turner, V. F. 1967. The Forest of Symbols: Aspects of Ndembu Ritual. Ithaca NY: Cornell University Press.

Turner, V.F. (1974). Dramas, Fields, and Metaphors: Symbolic Action in Human Society. Ithaca, New York: Cornell University Press.

Turner, V.F. (1986). "Dewey, Dilthey, and Drama: An Essay in the Anthropology of Experience." In The Anthropology of Experience, edited by Victor Witter Turner and Edward M. Bruner. Urbana, IL: University of Illinois Press.

Wilcock, A. (2006) An Occupational Perspective of Health. Thorofare, New Jersey: Slack Incorporated.

Willett, J. and Deegan M. J. (2001). Liminality and Disability: Rites of Passage and Community in Hypermodern Society. Disability Studies Quarterly, 21(3): 137-152.

 

Autism, Communication and Family

 

 

 

Autism, Communication, Family & Community

 

Pamela Block (Stony Brook University)

Hope Block

Barbara Kilcup

American Anthropological Association 2009 Meetings

November 21, 2008

(earlier version presented at the June, 2008 

Society for Disability Studies meetings in New York).

All people with autism, but especially non-speakers, face significant challenges in communication, social interaction, and acceptance. Non-speakers are often thought to be low functioning, treated with distain by disabled peers, and infantilized by family and staff. Stigma exists on multiple levels as movement and communication differences locate this group well outside the social norm. Some face additional challenges when the validity of their mode of communication is questioned or rejected outright.

Hope uses supported typing, referred to in the literature as facilitated communication/FC. She types with her mother, Barbara and with some of her staff. When she 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. 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.

Hope, and others who use FC, are often subject to the disbelief of professionals, family and community members. Most recently, just a few weeks ago, a program person with the local Special Olympics team who, to our knowledge has never seen Hope type, informed one of Hope's vocational support staff that "She and Hope go way back and there is *no* way she is typing these messages herself." In our presentation we seek to explore the notion of "independent" communication in family and community life and how belief or disbelief can influence the ability to communicate.

          Autism, when studied in clinical biomedical and educational contexts is too often approached in relation to compliance or noncompliance to complex regimens. Influential researchers with an evidence base of extensive but flawed double-blind studies have deemed supported typing to be invalid and this view has been widely accepted in professional and popular cultural contexts. Anthropologists have weighed in on this debate. When beginning this paper I was pleased to find that two publications on autism authored by anthropologists were available at the public library around the corner from my house. "How wonderful," I thought, "that anthropologists were not only contributing to the literature on autism and obviously getting a wide audience, since these books (I couldn't help but check) were in regular circulation." Indeed Dawn Pince-Hughes' (2005) Songs of a Gorilla Nation and Roy Grinker's (2007) Unstrange Minds, both subjective accounts of autism, family, & community, have greatly influenced this paper. So I was crushed to find, in a single paragraph of his otherwise insightful and well-researched book, anthropologist Roy Grinker summarily dismissing supported typing as a delusion of the facilitator. He provides a single uncited example of facilitated communication interpreted a particular way in one social context – that of an ultra-orthodox Jewish sect where FC is seen as a means to channel divine messages – and leaves the reader to think this example is somehow representative.

          Indeed this research by Bilu & Goodman (1997) find the use of FC in ultra-orthadox Israel communities an interesting interaction between secular/rational and mystical/religious reasoning. The rationalist interpretations consider FC as “circus-like performances” where the “children’s precarious well-being was put at extra risk because of their harsh exposure to the limelight,” (p. 392). Compare this to Hope's earlier assertion that it is in the public presentation space, or in front of even a small group of people where she feels most able to communicate. Yet according to Bilu & Goodman “FC does empower the incapacitated children in a double sense, allegedly improving their communication skills and assigning them a high status as mediums,” (p. 396). Bilu & Goodmen appear to almost, but not quite, consider the possibility that the children may actually be participants and agents in valued and culturally relevant religious practice. Ultimately, their portrayal reveals the pejorative slant concerning not just physical difference (the terms incapacitated, damaged, deranged, deviant, used repeatedly throughout the article, are hardly value neutral) but also religious difference. Bilu & Goodman see the autistic children and other “deviant” entities are vehicles by religious authorities to maintain religious hegemony. They do not consider the possibility that the children may be willing participants in the valued mystical beliefs and practices of their communities. In ultraorthodox communities many ritualistic autistic behaviors, including the practice of FC, are not seen as deviance but as ideally suited for encouraging a mystically holy interaction with the world to which all members of this particular community strive.

          In contrast to the way FC has been represented within anthropology, there is actually a growing body of qualitative and quantitative evidence to support the validity of FC (Biklen 2005, Bara et al. 2001, Cardinal et al. 1996, Niemi & Kärnä-Lin 2002, Rubin et al. 2001, Sheehan & Matuozzi 1996). Recently there have been several insightful examinations of the socio-cultural and historical contexts of supported typing and the process by which individuals, such as Sue Rubin (portrayed in the Oscar-nominated documentary 'Autism is a World') and others, have moved from supported to independent typing (Baggs 2008, Biklen 2005, Rubin et al. 2001). Erevelles (2005) and Kliewer et al. (2006) provide extensive historical analyses of how systemic disbelief in the literacy and intelligence of people with physical differences has lead to organized and often successful attempts to discredit and disenfranchise. Famous examples include eighteenth century slave and poet, Phillis Wheatley, and 19^th century writer Pierre Rivière, and 20^th century writer Helen Keller. Though not anthropologists, Biklen, Kliewer et al., Rubin et al. and Erevelle’s painstaking use of ethnographic, archival, and subjective data are consistent with anthropological methodologies. In addition, their emphasis on questioning established understandings of "truth" maintained by authoritative individuals and systems is consistent with an anthropological emphasis on inclusion and helping groups and individuals previously rendered silent and invisible to "voice". My coauthors and I seek to correct misrepresentations and exclusions within the anthropological literature and to better understand the experience of autism by moving beyond rigid biomedical notions of what autism is/is not/should be. Our goal is to transcend positivist binaries which have served to limit the scope of autism research to a near exclusive focus on proving or disproving the “scientific” reliability and validity of various treatment and communication techniques. We wish to examine the disconnection between how applied professionals view and classify autism and how it is experienced directly by individuals and families (Offit 2008).

          My co-authors and I focus on the social context of communication: the inter-relationships and interactions between the people involved. Using our own family experiences we seek to: (1) investigate the role of communication in reinforcing or subverting social stereotypes; (2) establish how communication strategies influence social relationships, community presence and the capacity of autistic adults to lead fulfilling and rewarding lives, and; (3) identify social factors that encourage or discourage communication. We will provide examples of interactions we have had with professionals and experiences of “supported” living (which has at times included secret behavior programs, restrictions tantamount to house arrest and physical restraints) and explore how behavioral intervention strategies and classification systems have shaped our lives.

          In our ongoing dialogues about the limits and horizons of autism we are constantly challenged, as individuals and as a family, to define ourselves, our rights, our positions in each others' lives and what we seek from each other, from friends, from professionals, and from our local and national communities. In our larger project we consider the following questions:

1.  How do presumptions of ability and disability shape quality of life and significant relationships for nonspeaking adults with autism?

2.  What opportunities are created or precluded by the belief (or disbelief) that communication is possible?

3.  What types of social interactions encourage or inhibit communication? What social contexts and supports build capacity to move from supported to independent typing?

4.  What strategies can be used to guard against excessive influence, manipulation or abuse of supported typing?

 

In Rubin et al. (2001), Sue Rubin describes supporting and motivating factors for her move from supported to independent typing, including: (1) a desire to show her intelligence and (2) anger at skeptics. The article suggests that strong social support from family, community, professionals and staff is essential for success in independent typing. We will further explore the role that these and other factors play Hope's experience with regard to supported vs. independent typing.

     In the fall of 2004 I was participating by phone in a meeting that was happening in another state. Hope and Barbara were there in person as were an administrator, clinician, and staff person from Hope's residential agency. Also present was one of Hope's vocational administrators, who was from a different agency. Vocational program staff had learned by chance, and informed us a few weeks previously, that the residential agency had, several years before, instituted a behavior program that included, among other questionable components, approval for the use of a physical restraint and confinement to her bedroom and home. Apparently the agency administration thought including Hope's family in a discussion of challenging behaviors would violate her right to privacy. In other words, it would violate her human rights to let us know that the agency was violating her human rights.

          At the meeting, while Barbara tried to explain movement differences using examples from a book by autistic author Donna Williams, the residential program staff person rolled her eyes and the agency administrator explained (with greater diplomacy than I'm about to use) that, unlike Hope, Donna Williams is not mentally retarded. The agency psychologist then proceeded to pontificate about how the agency professionals were more qualified than the family in understanding and addressing Hope's needs, using a patronizing tone and words clearly meant to put us in our place. During his speech, I was pacing about my house, muttering to myself, and pounding my fists into my thighs. I later realized that, based on Hope's 8-level "problem behavior" program, I was at "Level III Anxiety" defined as "rocking, flapping of arm/hand, intense and constant heavy nasal breathing, observation of pulse in neck, and, if standing, marching, kicking, flailing."

          How did we get here? A family dedicated to disability rights, self advocacy, and disability studies? I have a Ph.D. in cultural anthropology, specializing in disability studies and Barbara has a master's in special education. We go to all the right conferences. In fact, the residential agency administrator goes to some of the same conferences. So, how did we get to this place? Quite easily in fact, since the system is set up to treat autistic behaviors and autistic communication as "problems."  In Hope's behavior program an escalating measure of problem behaviors places "refusal" or noncompliance at the eighth and highest level. When Hope moved away from home, attempts were made to train her staff in the use of supported typing but these quickly degenerated into "facilitating" with pen and paper and simple dictation where Hope was told what letters and words to type. Hope's use of supported typing had all but stopped during this same period the so-called "behavior program" and the so-called "problems" it addressed were taking place.

          In 1903 Mark Twain wrote in a letter to Helen Keller: "You are a wonderful creature, the most wonderful in the world--you and your other half together--Miss Sullivan, I mean, for it took the pair of you to make a complete and perfect whole." By this statement, Twain was not diminishing Helen's individuality or independent personhood. Rather, attempting to comfort Helen after her traumatic experience of being accused of plagiarism, Twain goes on to discuss the interactive nature of ideas and discourse. As scholars, writers, artists and activists we know that concepts are fluid and, despite attempts at appropriate citation, ultimately become community property. Rubin et al. discusses how her communication process is influenced, indeed interfered with, by her facilitators. Once, she could only type when she had physical support. Now that she can type "independently" (with reduced or no need for physical support) she can discuss the more subtle factors that influence her communication. Differences of opinion, knowing that some would prefer that certain information not be shared with others can all influence communication whether we have someone physically prompting us or not. As Twain so insightfully comments, when we collaborate, work in partnership or even work against each other, communication is profoundly relational. When the environment was hostile, the people disbelieving, not supportive and, in some cases actively abusive, when access to preferred technologies and techniques were denied her, Hope did not type. Away from that service provider, once again surrounded by supportive family and staff and with access to preferred technologies and techniques, that has changed.

When we asked her, "how did you feel when you were at [previous residential agency] and you could not adequately communicate?," she responded:

I am trying to forget about it. It was frustrating and difficult to get my way all the time. I am much happier now. I can communicate much more easily. Now I love my life and can safely face the day. I can tell people how I feel with my device and be like a typical person when I type. I get easily frustrated when it [the device] doesn't work.

 

Hope lives with the daily skepticism of people who have interacted with her for years and claim to "know" her. This includes family, friends and service providers. Barbara and I have witnessed her tolerance, patience and also some incredibly subtle (and sometimes not so subtle) ways of defending and protecting herself. Yet we are also disturbed by her vulnerability to the consequences of the doubt and disbelief of others, and this threatening influence to her quality of life. As an anthropologist, I explore how systems of power influence my sister and other autistic people. As a sister, I want to shake up the social structures and beliefs that result in her being treated as less than competent, less than human in some others' eyes. I am heartened that although we continue to have individuals like the former residential service providers, and the Special Olympics staff person, there are others, like the professor of Physical Therapy who has invited Hope to speak to her class, and the peer reviewers from the many professional, activist & scholarly conferences where she has been invited to present across the country. It is in the public sphere of presenting and the tensions created with the conflicting influence of an audience's potential for belief and disbelief that Hope can communicate most clearly. Given the 2009 conference theme on inclusion it is appropriate to consider the significance of who is being included in or excluded from a greater social dialogue.

References

 

Baggs, Amanda (2008). "Autistic Aug Com Users." Downloaded November 12, 2008. http://ballastexistenz.autistics.org/?page_id=143

Bara, B.G., Bucciarelli, M., and Colle, L. (2001). Communicative abilities in autism: Evidence for attentional deficits. Brain and Language, 77:216-240.

Biklen, D. (2005). Autism and the Myth of the Person Alone. New York City: New York University Press.

Bilu, Y. and Goodman Y.C. (1997). What Does the Soul Say?: Metaphysical Uses of Facilitated Communication in the Jewish Ultraorthodox Community. Ethos 25 (4): 375-407

Cardinal, D.N., Hanson D., & Wakeham, J. (1996). Investigation of authorship in facilitated communication. Mental Retardation, 34:231-42.

Erevelles, N. (2005). “Signs of reason: Riviere, facilitated communication and the crisis of the subject. In Shelly Tremaine (Ed.), Foucault and the Government of Disability. Ann Arbor: University of Michigan Press.

Grinker, R. R. (2007). Unstrange Minds: Remapping the World of Autism. Cambridge, Massachusetts: Basic Books.

Kliewer, C., Biklen, D. & Kasa-Hendrickson, C. (2006). Who may be literate? Disability and resistance to the cultural denial of competence. American Educational Research Journal, 43(2):163-92.

Niemi, J. and Kärnä-Lin, E. (2002). Grammar and lexicon in facilitated communication: A linguistic authorship analysis of a Finnish case. Mental Retardation, 40(4):347-57.

Offit, P.A. (2008). Autism’s False Prophets: Bad Science, Risky Medicine and the Search for a Cure. New York: Columbia University Press.

Prince-Hughes, D. (2004). Songs of the Gorilla Nation: My Journey Through Autism.  New York: Harmony Books.

Rubin. S., Biklen, D. Kasa-Hendrickson C., Kluth, P., Cardinal, D.N. & Broderick A. Independence, Participation, and the Meaning of Intellectual Ability. Disability and Society, 16(3): 415-29.

Sheehan, C.M. & Matuozzi, R.T. (1996). Investigation of the validity of facilitated communication through disclosure of unknown information. Mental Retardation, 34:94-107.

Twain, M. (1903). "Letter to Helen Keller from Mark Twain" downloaded May 22, 2008 from Helen Keller Kids Museum Online http://www.afb.org/braillebug/hktwain.asp .

 

Hope’s comments Part 1 (w/Barbara)

Q. What do you think about the things Sue Rubin says about the "awful interference"...

A.  She is right about it.  I am influenced by what I think people want to hear and have intuition about what they think. The interference is not as bad for me.

Q. How much do people's opinions influence your
ability to type?

A. It is harder when people don't believe I can type.

 

Hope’s comments Part 2 (w/Barbara)

I am a nervous wreck about New york.  It is more people tjat I don't know who don't believe I can type.

Q.  Ar there people in your life who question whether you are really typing?
A.  My dad, my grandparents and my Aunt Marty.  I can deal with it because i know they love me.

 

Hope’s comments Part 3 (w/Carol and malfunctioning device)

1.  What make's it easier for Hope to communicate? pppaeeeeeeeeeettttientttt,

 

2.What makes it harder for Hope to commuincate? loooooooooooouuuuuuuuuuuuuuuuuuuuuudddddd

 

3.What does it feel like when typing with:

 

Mom:  more helpfffuullllllllll

Staff:  nnnnervoussssssss

Self:  i do notttttt knowwwwwww

 

4.  What do you want people to know about Hope/me?

 

bouupyyyyyyyy  bout tttttreatt trrrrrrrrrrruuuuuuusssssstttttttt  happyyyyyyyyyyyyyyy

 

hopeeeeeeeeeee

 

Pam, its Carol.  I asked Hope your ?'s and these are the above responses.

 

1. Patience

2. Loud

3. More helpful (with mom), nervous (with Staff), I don't know (Self)

4. treat, trust, happy

Barbara’s comments

Hope stopped typing at the old agency because the device she had been using stopped working, and the company went out of business so it couldn't be repaired.  At the same time, I was having some health issues, and wasn't as available to type with her. She was reluctant to type even when I was available because it was hard using a computer because of her heavy touch.  She would type occasionally with a staff person who supported her during the day, using a letter board.  I don't believe she trusted staff from the residential agency because of previous misuse.

I went to various advocacy conferences (TASH) where I saw several people who used supported typing (fc), and saw them presenting and conversing with each other
using this method.  I hoped that being involved in such conferences might encourage Hope to start typing again. I took her to one where Linda Rammler who serves on the New England board with me was presenting. She was able to type with Hope, after some initial resistance. Linda subsequently offered workshops training staff to use the method, with her consultant Jacob who has since presented with Hope.

By this time, she was living with me again, and it took a year to obtain funding for the Dynavox which she is currently using. As supported typing is not considered a valid method by alps in RI, it has been difficult to find one who is familiar with the device, and has an open mind toward the method.  We still have not been successful, and have used Dr. Rammler and Jacob for training.

Hope still is reluctant to type with staff and with me.  However, when she is presenting an audience, there is no resistance. She still will not use it in general conversation which limits her ability to communicate with others. She has expressed that it is hard for her to initiate dialogue.