- Vocabulary Set: College Life
- Vocabulary Set: Emergency Preparedness
- Vocabulary Set: Employment
- Vocabulary Set: Health Care
- Vocabulary Set: Personal Assistance Service
- Vocabulary Set: Reporting or Telling about Being a Victim of a Crime
- Vocabulary Set: Sexuality, Intimacy and Healthy Sex
- Vocabulary Set: Transportation
Socially-valued adults roles: Needed vocabulary for AAC Users
Why "Employment, Independence, Marriage and Sexuality?"
Because....We Want it All!
Diane Nelson Bryen, Ph.D.
Bonnie M. Moulton, M.Ed., OTR/L
The theme of this Pittsburgh Employment Conference is Employment, Independence, Marriage, and Sexuality. Many have asked, why. What does independence, marriage and sexuality have to do with the employment part of the Pittsburgh Employment Conference? Quite a lot. It is about being an adult. Adulthood generally means working, establishing intimate relationships, being sexual, marrying if we choose, becoming a parent, and having personal autonomy and independence.
Being an adult in America, we want it all! Being an adult who uses augmented communication, we want full adult status, too. We want the opportunity to work, earn a reasonable income and be valued as workers/contributors. We want to have access to an education that adequately prepares us for the roles of adulthood. We want to have an effective means of communication with vocabulary that supports our desires and needs to talk about adult issues, such as work, intimate relations and, yes, sex, marriage and parenting. We want to express our sexuality as responsible adults. We want satisfying adult relations, that might be heterosexual or homosexual, that may include marriage and having children.
Why does the idea that people with significant disabilities "want it all" make so many people nervous? We would suggest that wanting to be a full adult requires a shift in long-standing attitudes and stereotypes about people with disabilities. It requires a dramatic shift in public policy, a shift in financial (dis)incentives, a shift in educational practice, and a shift in how we design and manufacture augmentative communication devices.
Is this too much to ask? Absolutely NOT! In fact, what we are asking is already guaranteed under the constitution. In Meyer v. Nebraska (1923), the US Supreme Court recognized that a person's right "to marry, establish a home and bring up children" is a fundamental right protected by the fourth and fifteenth amendments to the Constitution (Gilhool and Gran, 1985, p. 11).
Is wanting to work and be productive, be educated, have intimate relations, be sexual, and be a wife/mother; husband/father or lover too much to ask? Absolutely NOT! In a study conducted in an eastern public university, more than a hundred nondisabled students drew associations for "woman" and "disabled woman". The associations couldn't have been more different. "Woman" drew associations of:
worker ("intelligent, leader, career"),
sexuality ("soft, lovable, orgasm"), and
mother or wife ("wife, mother, mom, married, childbearer").
Women (and men) with disabilities were virtually never depicted as wife, mother, or worker by the more than 100 students (Fine & Asch, 1988; Waxman, 1991). We want this to change!
What Do We Know About Adult Men and Women With and Without Disabilities?
We know that more than two-thirds (67%) of men and women with disabilities (ages 16 through 64) are unemployed despite the overwhelming desire to work; despite 20 years since the passage of the Individuals with Disabilities Education Act, despite the passage of the "tech act" in 1988, despite the passage of the Americans with Disabilities Act in 1990, despite improvements in employer attitudes since the passage of the ADA (Harris & Associates, 1998), despite the lowest unemployment rates in history, and despite the six years of the Pittsburgh Employment Conference. The picture is even grimmer for adults who use augmentative communication approaches where only 15% are employed (Blackstone, 1993; Slesaransky-Poe, 1997).
We know that 60% of more than 300 women with disabilities recently studied are sexually active (Brownscheidle, 1998); that most women with disabilities have the same capacity to conceive as nondisabled women; that the abstinence option which has often been encouraged for women with disabilities has no more relevance for women with disabilities than for our non-disabled peers; and that many couples with disabilities—both heterosexual and homosexual—engage in satisfying intimate relationships with or without sexual intercourse. (Welner, 1998)
We know that people with disabilities marry and have children. In Alberta, Canada, 58% of people with disabilities are parents, 16% single parents (their sex is not reported) and 84% live with their partner (Human Resources Development Canada, 1994). Women with disabilities marry less, are likely to marry later, and are more likely to be divorced than women without disabilities (Fine & Asch, 1988).
We know that disability continues to be viewed as a presumption of parental inadequacy; that disability continues to be viewed as prima-facie evidence of parental inability; and that laws governing the rights of parents with disabilities are still laden with stereotype.
We know that many state courts continue to treat disability as prima facie evidence of parental unfitness (Gilhool and Gran, 1985).
We know that women with disabilities are more often advised not to have children and are less likely to be able to adopt children than women without disabilities (Tremain, 1992; Ridington, 1989)
We know that the family is the basic social unit within all societies (Thurman, 1985); but what about parents who happen to have disabilities and who have the desire to create a family including having children?
We know that people who are respected and considered an equal are not generally abused (Waxman, 1991).
We know that people with disabilities are at higher risk for sexual violence than are people without disabilities (Sobsey, 1994):
- For people with cognitive disabilities, the rate of sexual abuse ranges from 25 to 67% and among women with cognitive disabilities, the rate of sexual abuse ranges from 83% to 91% (Sorenson, 1997);
- 50% of women with disabilities have been assaulted 10 or more times. This rates compares to 32% of men with disabilities and 13% for women in the general population who will be sexually assaulted at some time during their life (Sorensen, 1997);
- women with disabilities have also been sexually oppressed by being prevented from most or all opportunities to fill the normative roles of nurturers and a focus of attention for sexual desires. Thus, they are perceived to have no value in our culture (Waxman, 1991).
We know that the best victim is one who can't tell (i.e., people who cannot communicate; vocabulary not readily available on one's communication device). However, there have been no studies that have looked at the risks of sexual abuse specifically among persons who use augmentative communication. This issue is compounded further by Sobsey's data on legal action. Nearly 40% of cases of sexual assault against people with disabilities are never reported to the police; when reported, no charges are brought in 63% of the cases; in 24% the accused is acquitted; in only 13% of the reported cases is the accused convicted (Sobsey, 1994).
What do we Know about Public Policy and Financial (Dis) Incentives: Supports for Becoming an Adult Worker, Sexual Being, Partner/Married, and/or Parent
We know that more that $22 billion was spent in 1996 for services and supports for people with developmental disabilities and that during the past 20-year period most states spent far more for institutional operations than for community services and supports (only in 1996 did the federal government spend more for community Developmental Disabilities services than for congregate care services in public and private institutions (Braddock, Hemp, Parish, & Westrich, 1998, p. 12).
We know that in 1992, American public policy continued to be more invested in sheltered employment and nonproductive day activity (81%); than in supported or competitive employment (19%) with little improvement in 1996 (80% in sheltered employment or day activity; 20% in supported or competitive employment) (Braddock, et al., 1998, 44). Despite some changes from the Social Security Administration, there continues to be financial disincentives to becoming competitively employed (i.e., loss of not only cash benefits, but more importantly potential loss of medical coverage) (National Council of Disability, 1997).
We know that there is no federal legislation entitling a person with a disability to personal assistance services. Access to personal assistance services varies from state to state. Yet, we know that personal assistance services is one critical "ramp" for independence, for competitive employment, for going to college, and for engaging in many adult life activities.
We know that, according to the World Institute on Disability and Through the Looking Glass, no state program explicitly permits the use of personal assistance services for needed or desired sexual assistance or for assisting parents with disabilities in caring for their children. Yet, we know that personal assistance services is a needed support for many parents with disabilities so that we can exercise our human rights and fulfill the responsibilities that go with parenting (see for example the Michigan Case re: Bill Earl and Leigh Campbell-Earl and the issue of personal assistance services and parenting).
We know how important child care is for most parents—with and without disabilities, especially as it relates to Welfare Reform and return to work. Yet according to Litwak et al (1987), only a decade ago California attempted to prohibit people with disabilities from using their personal assistants to care for children. A decade later in Pennsylvania, the situation is not much better.
When we called a state agency in Pennsylvania and asked "Is there a statewide policy on the use of personal assistance services to help parents with disabilities with child care tasks?" the answer was that personal assistance services cannot be used for child care or pet care unless the animal is a service dog (Personal communication, June, 1998). We then called an agency providing personal assistance services in southeastern Pennsylvania and
"identified myself as a woman with CP interested in hiring a personal assistant to assist with child care—specifically for tasks involving lifting and carrying of an infant. Asked if personal assistance services could be used for such tasks. She said: "If you hire your own attendant, you can pretty much ask them to do whatever you want." I said, "What if Medicaid funds my personal assistance services?" She said, "It is very rare for a person to get funding for personal assistance to help with childcare, what has to happen is that care for the child has to be written into the plan. For example, "assist Mary S. with feeding and dressing infant child as needed." The personal assistant is supposed to be providing services directly to the client and except in rare cases, the child is not considered the client unless the plan is written to cover this. I said, "So I could ask a personal assistant paid for by Medicaid to walk my dog or feed my goldfish but not feed my infant?" She said, "Yes, because the infant is a separate individual, another person. But feeding your goldfish or walking your dog is a part of your activities of daily living." I asked how caring for one's child could not be considered to be an activity of daily living. She implied that she thought this was a reasonable question but told me it was not her fault (Personal communication, June 3, 1998).
We know that the family is the basic unit in most societies and that every state in the United States has some family support legislation. The purpose of family support legislation is to "preserve, strengthen and maintain the family unit" (Families of Children with Disabilities Support Act of 1994, Sec. 702 (a). However, family support legislation is not directed to parents with disabilities. No state's family support plan includes supports for parents with disabilities. Instead it is focused on children with disabilities (Agosta, personal communication, 1998).
We know that there are financial disincentives not only for working -- a major adult activity—but for getting married as well. The Social Security Administration enforces the "1 and 1/2 rule" which states that a single recipient of SSI can have $2000 in resources; however, a married couple on SSI can have only $3000. What are the implications for couples with disabilities who are on SSI and who wish to get married?
To summarize so far, current public policy (including legislation and funding) fails to promote the vision, much less the reality, of people who use augmentative communication becoming workers, spouses, or parents. As such, current public policy implies that "No, you can't have it all. You cannot expect to become full adults who are valued in our society. You must remain less valued, poorer, more isolated and with fewer supports, and more likely to be victims of crime."
Does education prepare students who use augmentative communication approaches for a full adult life—as a worker/colleague, a boss, a friend, a parent, a lover, a healthy and safe sexual adult, an intimate partner, a husband, or a wife.
We know thatsince the reauthorization of the Individuals with Disabilities Education Act in 1990, all students with disabilities have been entitled to an Individualized Transition Plan starting at age 16 to begin the planning process for transitioning out of school and into adult life (i.e., work, independent living, higher education). This is in addition to an annual Individualized Education Plan. However, many students still do not have an Individualized Transition Plan (Petroff, 1998) and little is known about the contents of these plans. Less is known about the contents and implementation of Individualized Transition Plans for students with significant communication and physical disabilities. However, we do know that these plans should begin to address employment; supported and/or independent living skills; hiring and managing one's personal assistant; developing intimate adult relationships, including, marriage; parenting skills; and most importantly sex education.
We know that at least one court case (In re: CME) found that with regard to parenting "we refuse to punish a parent for her lack of parenting skills which is based, at least in part, on her limited intellectual ability...." Young adults with significant disabilities should have the opportunity to learn basic parenting skills in schools. Without these opportunities, their rights and choices may be compromised. We do not know to what extent parenting skills are typically taught in schools to students with and without disabilities.
We know that the best way to confront, resist and report sexual abuse is to learn how to talk about sex, acquire a vocabulary, and understand the concepts of positive sexuality (Berkman, 1986). Promoting healthy sexuality through education and information does not conflict with respect for privacy in intimate affairs. Goals of sex education are to enhance self-esteem and the development of loving relationships and to prevent sexual abuse.
"I wasn't given sex education until I was 40 years old. Lack of information didn't protect me. I was sexually assaulted at 20. And I couldn't tell."
As important as sex education is for developing healthy and safe adult relations, we know little about whether students with disabilities have access to this information during their educational experiences!
We do know about one student who uses an augmentative communication device (and we thank TC and her mother for sharing it with us).
TC is a senior in a special services high school. She is developing competence in using her augmentative communication system and in using a computer for word processing and e-mail. She uses powered mobility and personal assistance services to support her increasing independence. TC has had some part-time work experience in a family business.
TC has a current Individualized Education Plan and Individualized Transition Plan. According to her Individualized Transition Plan, her post school outcomes (long range goals) are for her to "reside at home but will explore options for the future. Parent and TC want her to be involved in community activities, TC will require a personal attendant for all activities. Parent is interested in TC auditing courses at local community college. TC will access local transportation for increased community involvement."
According to TC's Individualized Transition Plan, order to achieve this goal, the following "Planning Services will be provided:
- out-of district program
- post graduation living arrangements
- contact with appropriate state agencies (the Arc and Division of Developmental Disabilities)."
In addition, the following "Pre-Exit Preparation Services may be accessed:
- parent/student counseling
- vocational specialization
- participation in job seeking preparation
- post graduate living arrangement
- contact with appropriate state agencies."
Finally, the following "Exit Preparation Services may be accessed:
- updated assessments
- independent living options
- protected work environment
- linkage with social services
- linkages with medical/health services
- post-secondary education services
- social security information
- public assistance
- custodial care"
Note the absence of educational services that will support TC in becoming a full adult(i.e., no work/study program or college exploration program, no mentoring or career awareness opportunities, and no sex education and parenting programs).
We recognize that this is only one Individualized Transition Plan. It is our sincere hope that this one Individualized Transition Plan does not reflect "best or current practices" in education.
Communication Devices and Augmented Communication
Communication is the basis of all human relationships (Creech, 1994). That includes relationships as a worker/colleague, boss, a friend, a parent, a lover, a partner, a husband, and a wife. So... does the vocabulary that is preprogrammed into our devices reflect this? Does this preprogrammed vocabulary meet all of our needs as full adults? Does this vocabulary convey to professionals and other allies what is important and legitimate to "talk about" or conversely what we should remain silent about?
Is there vocabulary about employment? Is there vocabulary for adult intimate heterosexual and homosexual relationships, including marriage and parenting? Is there vocabulary about sex, sexuality and sexual abuse? Is there vocabulary that can be used so that no one remains a silent victim when trying to communicate with the criminal justice system or with victim assistance services?
We know that despite the need for employment-related vocabulary (Stump, 93; van Tatenhove, 1993), a review of three vocabulary sets provided only between 6 and 28% of typically used work-related vocabulary. ) Words that were excluded from one or more vocabulary sets include:
We know that all children with and without disabilities need to know the correct words, their usage, and be able to express him or herself appropriately regarding sexual matters (Cole and Cole, 1993). We also know that being able to express one's sexuality increases our self-confidence and self esteem, and can be a contributing factor in the prevention of sexual abuse, molestation, or exploitation (Farrar, 1996). We know that having the vocabulary (and the opportunity) to talk about sex and sexuality will likely help us to recognize appropriate versus inappropriate sexual behaviors in ourselves and in others.
Sadly, despite what we know, Balandin and Iocono (1993), who studied the vocabulary on 61 language boards in Australia, found that they lacked words/phrases to control conversation. Similarly, in our very preliminary research of three widely use symbol sets, we found only between 5 and 17% of commonly used words about sex and sexuality). Words that were excluded from one or more vocabulary sets include:
Important vocabulary to prevent or report sexual abuse was also infrequently included in the three vocabulary sets that we reviewed. Words that were excluded from one or more vocabulary sets include:
- assault/sexual abuse
Similarly, very few words for relationships, marriage and parenting were found (ranging from 12% to 37% of commonly used words). Words that were excluded from one or more vocabulary sets include:
- birth control
So, clinicians, device manufacturers, and symbol set developers, please note that men and women who use augmentative communication devices or language boards are often dependent on others to include vocabulary pertaining to our sexuality. Do not inadvertently conspire to maintain the stereotype that we are not sexual persons. Do not inadvertently keep us silent victims of sexual abuse by failing to pre-program critical vocabulary that may help us prevent abuse or testify against perpetrators when abuse does occur.
What Does This Mean for a Young Adult Who Uses Augmentative Communication?
The choice to marry and raise a family is something that most young adults take for granted. They assume it will happen some day and, in due course, it usually does. For a young adult who is an augmented communicator and who is considering marriage, a question that needs to be asked, in addition to a myriad of others, is "How will this effect my SSI payments?" Your payments will be effected (and reduced) by something called "spousal deeming" wherein assets belonging to your spouse are counted as yours when SSI benefit amounts are calculated. If your spouse also receives SSI, your combined benefit amount will be reduced by something called the "1 and 1/2 rule." This means, for example, that if your SSI benefits were $500.00 per month and your spouse was also receiving $500.00 per month, the benefit check you would receive as a couple would be for only $750.00. Effectively, you have been penalized for doing what people without disabilities do.
Let's expand on this scenario. Let's say that you are the romantic type and marry in spite of the best efforts of the Social Security Administration to keep you single. Let's say further that you and your husband or wife decide to have children and are planning to do so with the assistance of the Personal Assistant who has been working for you for the past two years. Here comes the next assault on your personal autonomy! If you pay your personal assistant out of pocket, you can pretty much ask them to do whatever you need. But if the personal assistant is publicly funded, s/he cannot provide assistance with child care tasks. So, you have the option, with the cooperation of your personal assistant, of lying about what they do for you, paying large sums of money out of pocket, or choosing to remain childless. None of these options promote personal dignity or choice as an adult.
Last chapter in the scenario: You acknowledge the fact that the Social Security Administration (and very likely several other well-entrenched American institutions as well) would prefer that people with disabilities not marry or have children. You may be saying to yourself, "Can I at least have intimate relationships?!" Let's talk about that. Let's please talk about that for the rest of this weekend and when you get back home, too.
What? You can't talk about it until you or someone else program the words "intimate" and "relationship" into your device? Well then... I think we have some work to do.
I think we need ways to talk about what is important to us, among ourselves and with others who we care about. We need to educate ourselves and those who provide services to us about what we need, want and deserve in our work, our relationships and our lives - not to mention our communication devices. Education is important. The freedom to act is balanced by responsibility to oneself and to others. We are all adults and we are all sexual beings with the choice to express our sexuality in ways that are not harmful to others or ourselves. Sometimes that is difficult. Many children and adolescents with disabilities do not have the same opportunities for socializing or interacting with peers as do adolescents without disabilities. The need for sex education is rarely mentioned at an Individualized Education Plan or Individualized Transition Plan meeting. Privacy can be a rare thing if you need extensive physical assistance with self care from family members or a personal assistant. This means that some of us may be uncomfortable with our sexuality and it means that some—no, many of us—are particularly vulnerable to exploitation and sexual assault.
Why are we saying this now after we just encouraged you to think about the possibility of having intimate relationships? Because, unfortunately, abuse is a fact of life for too many people with disabilities. But, contrary to what some people might believe, refusing to talk about sex is not the way to protect ourselves. Learning about yourself and the way you deserve to be treated is a better way. Learning about your body and how to care for it and respect it is a better way. Learning about the ways in which people can and do express healthy sexuality is a better way.
There are better ways to do many things. There are better ways to support people in the workplace and in their homes. There are better ways to support parents with disabilities. There are better ways to educate and prepare young people - not just for work but for all of the roles that an adult citizen of American society is expected to fulfill. Let's keep talking about this, because we have a lot of work to do.
Setting An Agenda for Change
Let's begin talking about employment, independence, marriage and sexuality by setting an agenda for needed change. This agenda includes all of us here at the Pittsburgh Employment Conference, because all of us attending are stakeholders: teachers, vocational counselors, therapists, researchers, university faculty, manufacturers, family members, and most importantly those of us who use augmentative communication. We need to focus on public policy and finances. We need to focus on education. We need to focus on how to better design symbol sets and augmentative communication devices.
Our public policy agenda is very full. First we must continue to shift federal and state spending from segregated congregational care (state centers, nursing homes) to funding individual supports in the community (e.g., supported/assisted living). We can do this by working with our state developmental disabilities agencies to ensure that the Medicaid Home and Community-Based Waiver is fully utilized in our home state. This is a requisite to living a full independent life as an adult.
Second we must work to remove financial disincentives to having real work for real pay without the fear of losing our medical coverage. We must work with the Social Security Administration and with our state Medical Assistance offices to increase income levels without loosing public medical benefits.
Third, access to personal assistance services must become a national policy. Not only do we need to work at the federal and state levels, but we must work with influential disability organizations, such as the National Council on Disability, ADAPT, and the World Institute on Disability to broaden the definition of personal assistance services. Personal assistance services must be expanded to include assistance with child care, work-related assistance, and assistance in being a fully responsible sexual adult. In addition, we must work in our respective states to educate policy makers to broaden family support legislation to include support to parents with disabilities.
The education agenda is equally full. Parents, teachers, and peers who use augmentative communication need to help schools and teachers do a better job of preparing young students with disabilities for life after school as full adults. This will be no easy task. We must be vigilant in insisting that Individualized Education Plans and Individualized Transition Plans reflect high expectations for young students with disabilities. These plans must identify real opportunities, approaches and experiences for career exploration, for developing marketable work skills, for developing mature interpersonal communication, and for first job experiences. In addition, while uncomfortable for many, we must insist that all students with and without disabilities have sex education that is comprehensive, addressing all aspects of mature and responsible adult sexuality, including how to prevent and, if necessary, report sexual abuse.
Finally, communication device designers and manufacturers strengthen your ties with your customers—folks with disabilities and parents of young children with disabilities! Your customers will help you design better "hardware" and "software." Listen to and believe in our hopes for the future as workers, as spouses, as advocates, as lovers, as managers of our personal assistants, as parents and grandparents, and as mature sexual adults. Design communication devices that better reflect who we are as full adults.
Yes, we want it all!
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