Marriage between People with Cognitive Disabilities and Thwarting the Ability to Consent
By Keith Murfee-DeConcini
DSAB 626: Disability Law and Policy, Fall 2014
From the looks of their wedding photograph, there does not appear to be anything to suggest that Paul Forziano and Hava Samuels are different from any other young couple in love. Newly married, they pose together seated, before having their first meal as husband and wife. Both are dressed appropriately for the occasion and their smiles confirm that their happiness and contentment run deep. The title of the article is confusing then, as it reads: Put Asunder; Couple Fights for the Right to Live Together. (Howe, 2013) Something is missing; some dots have not been connected. Why is a newly married couple fighting to live together?
According to the article, the intellectual ability of the couple has been called into question by their group homes in Manorville, New York, (Independent Group Home Living Program and Maryhaven Center of Hope), both of which refused to let them live together, never mind the fact that they are now legally married. Both Paul Forziano and Hava Samuels were born with cognitive disabilities and despite the fact that they fell in love, the two group homes claim that they are too “intellectually disabled” to understand what marriage is.
The above story is an example, one of too many, of what has befallen people with cognitive disabilities. It showcases a strong barrier to emotional fulfillment that many people with disabilities cannot get past. This obstacle further illustrates the chronic indifference that the vast majority has towards people with disabilities, especially those with cognitive disabilities. The magnitude expressed by this indifference carries forth to blocking access to protections and rights under the law, despite the passage of the Americans with Disabilities Act in 1990. Nowhere is this more prevalent than in prohibiting sexual expression of people with cognitive disabilities, thereby thwarting their ability to give consent to a basic form of human expression.
One possible answer to explain the root issue and what caused it, is found in the 1978 book Sexual Consequences of Disability, edited by Alex Comfort. In the introduction to the book, Comfort writes that, “The needs of such people [people with disabilities] are better minimized or ignored, rather than discussed, for fear of embarrassing them—by which we mean that they embarrass or disturb us. Their sexual needs attract the same disapproval we accord to the sexual needs of older persons, as though they were in some way unseemly.” (Comfort, 1978)
While the case can certainly be made that views on the sexuality of older persons have evolved since then in the public consciousness to be accepted and even admired, the same case cannot be made regarding the sexual needs and desires of people with disabilities. More than 30 states either prohibit or restrict marriage between people with “developmental disabilities,”. (Redding, 2001) Developmental disabilities is often used as another term for mental retardation or cognitive disabilities, although there are more offensive words used in some statues, such as “mental defect”, “mental deficiency”, “unsound mind”, and so forth. In this paper, the terms of preference used will be cognitive or intellectual disabilities.
Often, a competency hearing can be required before a couple with intellectual disabilities can be granted their constitutional right to marry. Indeed, in order to obtain the right to marry, Forziano and Samuels went through extensive sexual education for over a year and half, and were asked to prove that they understood what they had learned, and how it applied to marriage. (Forziano, 2014) It goes without saying that this is not a requirement for people without disabilities.
Furthermore, it should be noted that the whole idea of testing individuals with cognitive impairments to determine if they have the capacity to consent to sexual activity stems from rape cases and sexual assault statues. (DeBellis, 2012) These “special” laws, and the thereby deleterious treatment applied to people with cognitive disabilities who have suffered sexual assault, will be discussed further below.
As regards to marriage, another root issue at play here that cannot be denied is the still lingering effects of the Eugenics movement, which had its heyday at the beginning of the twentieth century. Many laws were passed that restricted people with cognitive disabilities from marrying or from having children for fear that mental retardation would be passed onto their children. Forced sterilization was often a result. (DeBellis, 2012) It was also a time when the public came to view “the mentally retarded as …sexually promiscuous.” (DeBellis, 2012) These views, restrictions and inhumane activities are precisely those that the Americans with Disabilities Act and other legislation were designed to rebuke. To be sure, society has progressed beyond Eugenics and the resultant institutionalization and sterilization of the people with mental or other disabilities, yet still there is a reluctance to recognize the full humanness of people with cognitive disabilities.
Sara Gelsen, a member of the board of directors of the National Council on Disability, spoke up for the sexual and marriage rights of people with cognitive disabilities when interviewed about the Forziano and Samuels case. She says, “No one has the right to tell an adult what to do. Sex is a healthy and full part of the human experience. I know it makes some people uncomfortable to think that people with intellectual disabilities are engaging in sexual relations, but I don’t understand that.” (Associated Press, 2013) Love, sexual relationships and marriage are common life experiences that mainstream society takes for granted. Not so for those with cognitive disabilities. For these people it has been considered taboo for at least the last hundred years or so. The truth is more compelling and interesting, however, as love, marriage and sexual activity among the disabled is more prevalent, accepted and is actually unavoidable. (DeBellis, 2012)
The group homes would not allow Forziano and Samuels to live together, so their parents hired an attorney in January 2013 to bring a federal civil rights lawsuit against the state- sanctioned nonprofits that run the group homes and the Office for Persons with Developmental Disabilities, the New York state agency responsible for oversight of group homes, for denying their adult children their rights, under the ADA, the Fair Housing Act and the 14th Amendment. (Dolak, 2013) Their attorney knew of no other similar court cases, making it a potentially important case.
According to the lawsuit, Samuels’ home refused to accommodate the couple because they asserted that Samuels “doesn’t have the mental capacity to consent to sex.” A key concept here is “consent,” a term that will be explored more fully in the third part of this paper. Suffice to say here is that people with cognitive disabilities are often not considered capable of consenting to sexual activity under the law, regardless of age or maturity. (DeBellis, 2012)
The home where Forziano lived stated, “There is no specific legal requirement forcing the home to house [a married couple].” The home also contends that people who require the services of a group home are incapable of living as married people. (Associated Press, 2013) The case ventured into uncharted territory, both for the Americans with Disabilities Act (ADA) and the state of New York. Many legal experts watched the case closely, because if the case’s verdict were to be in favor of the couple, it could break new ground in clarifying the rights of people with intellectual disabilities to marry and live together without giving up their rights to the support of a group home. The Americans with Disabilities Act states that “a public entity shall make reasonable modifications in policies, practices, or procedures … to avoid discrimination on the basis of disability.” Since the group homes are licensed by the state and receive Medicaid funding on behalf of their clients, the homes are bound by the ADA.
Even though the Office for Persons with Developmental Disabilities sided with the group homes, the Office did eventually help the couple find a place to live, quietly approving a move to a new home that would house them together as a married couple. (Barrios, 2013) Though this was the first time East End Disability Associates in Riverhead, New York had offered housing for a married couple, similar agencies in New York state have housed married couples successfully for many years. (Howe, 2013) The notion that this couple is too “intellectually disabled” to understand what marriage is, is unfounded. However, if the couple should ever have to leave East End, or if the agency shuts down, they could be separated again.
Even though the couple could now live together with the support of a group home, the family decided to continue pursuing the lawsuit. Paul Forziano’s father explained the result the case hopes to accomplish. “The suit will continue, so the state will have to clarify its stance on married people with disabilities… It has to be the same services across the board.” (Dolak, 2013) They want to ensure that all group homes in the future will accommodate married couples.
Unfortunately, in March 2014, Judge Leonard Wexler of the U.S. Eastern Court of New York dismissed the case, stating that the “claims that their rights were violated were based on nothing more than speculation and conjecture.” (Pinciaro, 2014) Martin Coleman, the couple’s attorney, disagreed. “The group homes said, ‘No one can pass through these gates and live here as a married couple.’ That’s the edict. And the state said, ‘That’s OK with us.’” Coleman added, “Judge Wexler basically dismissed the institution of marriage for our clients and basically anyone like them as mere complaints about adequacy of services. I respectfully disagree.”
The couple and their parents are filling an appeal. The parents explain that they are still fighting in court so that no one else will have to fight the way their children did for the right to live together as married people without giving up the necessary support that a group home provides.
The simple fact is people with cognitive disabilities can and do fall in love. Here’s how another couple, Shelley and Bill from Maryland, describe their feelings about marriage. “It is like going into a new venture- flying into the world. That’s exactly how I think of getting married. It’s like two eagles flying into the sky together.” (Lewis, 2013) It turns out one does not have to have a normal IQ to capture the poetry of love. Having that insight, however, does not mean that a cognitive disability disappears, nor does the need for the supportive environment provided by group homes and the necessity for government benefits.
There is a much-needed dialogue about this issue and service providers need to be guided in developing new perspectives that allow for this flowering of humanity. “These are conversations that need to be had,” says Bethany Stevens of Georgia State Public Health. (Lewis, 2013) “I think people are recognizing this as a right just like self-determination. …we need to think about relationships and sexuality as well.” The desire to find a partner and someone to share your life with is natural. These natural inclinations are shared by many people with cognitive disabilities, no matter how much society resists the idea and would rather not deal with the whole subject. It is time to break the taboo.
Giving up Government Benefits
Another issue beyond the scope of this paper, but must be mentioned, is how people with disabilities who marry are penalized in being able to continue receiving much needed government and health care benefits. Their Social Security disability benefits can be adversely affected, for example, if they marry. Childhood Disability Benefits end if a person marries, unless their spouse also receives disability benefits. Medicare/Medicaid health insurance can be jeopardized and lost. Even wedding gifts of money can adversely affect government benefits. (Lewis, 2013) This sometimes crippling “marriage penalty” that disqualifies married people with disabilities from government benefits needs to be examined and rectified. These rules are basically anti-family rules and they affect all people with disabilities, not just those with cognitive disabilities. Marriage should not have harsher consequences just because one or both partners receive government disability benefits. Marriage does not end a disability. As attorneys Ed Wilcenski and Laurie Hanson ask, “If an individual with a disability is better off [financially] not married (as often seems to be the case) … are our public benefit rules family friendly?” (Wilcenski and Hanson, 2010)
Sexual Assault and Consent
As already stated in the beginning of this paper, the greater frequency of people with cognitive disabilities developing and maintaining healthy relationships that involve sexual expression, and even marriage, is considered an uncomfortable issue, one that is labeled as taboo and one that many service providers would rather not deal with. This part of the paper will address another aspect of the sexuality issue by examining sexual assault statues, how the sexual assault statues negate the civil liberties of people with cognitive disabilities, further infantilizing them, while failing to offer the same protections under the rape shield laws afforded to people without disabilities.
Sexual crimes are not federal offenses, and each state has its own definitions. Most states put all sexual activity involving people with cognitive disabilities under their sexual assault statues and all but three states in the country single out victims of sexual assault who have cognitive disabilities. (Macy, R et al., 2008) Consent is the key issue here and most states consider adults with cognitive disabilities to be like children, regardless of their age, and therefore they are deemed incapable of legally consenting to sex. (Macy, R et al., 2008) This in effect renders all sexual activity of people with cognitive disabilities illegal. Fortunately for those who do consent and even marry, this aspect of the law is rarely enforced. (Redding, 2001) In New York state, for example, no one is required to show “capacity to consent” to obtain a marriage license. For those with cognitive disabilities, though, as we have seen, private agencies caring for these individuals often insist on proof of capacity to consent to marriage. They use sexual assault laws to give themselves this power. (DeBellis, 2012)
Most statues require increased penalties for sexual crimes against people with cognitive disabilities, because of their legal incapacity to give consent. (Macy, R et.al., 2008) No matter how well-intentioned these statues were when written, to seemingly offer considerable protections to victims while enforcing severe punishment on anyone who commits heinous acts against a person with cognitive disabilities, the opposite happens. According to Sobsey and Doe (1991), studies found that “although the perpetrator was known to the victim in 95% of reported sexual abuse cases of people with disabilities, only 22% of the alleged offenders were charged, and approximately 8% of those charged were convicted.” So, we see that in the majority of sexual assault cases against victims with mental disabilities, very few perpetrators are charged, much less convicted. (Macy, R et al., 2008) In fact, in view of these facts, one can conclude that current statues and their implementation do little or nothing to protect people with cognitive disabilities and they may even enhance their risk of assault. Women with developmental disabilities experience sexual assault four times more than the national average. (Razack, 1995) This was part of the reason behind Cindy Wasiek’s mother’s desire to have her severely cognitively disabled daughter sterilized in 1994. (Block, 2000)
When trials do occur, the proceedings shift focus onto the victim, to ascertain if the victim is indeed intellectually disabled, and to determine if the victim could consent to any sexual act in the first place. (Razack, 1995) When a victim has cognitive disabilities, it is extremely rare for their disability not to make a front and center appearance at the trial. More often than not, when this happens, the attention of the trial is shifted from the heinous act of the assault to the nature of the victim’s disability and whether or not she could legally consent to this act. This is discovered by figuring out if the victim had “knowledge of relevant facts, intellectual ability, and voluntariness.” (Macy, R et al., 2008) The first point of discovery deals with knowledge of facts, which basically means that the court can get away with giving the victim a quiz on the nature of sex and see if they pass. If they pass the quiz, the court then has to assess their intellectual ability to understand the benefits and risks of engaging in sexual activity. If the results are positive, the court must also analyze whether the victim would have been overly vulnerable to being coerced. Furthermore, do they also understand that they have a choice of whether or not to engage in sexual activity? The central consideration of the trial has made its unfair shift to the victim, not the perpetrator.
Even more civil rights of people with cognitive disabilities disappear in these trials, too. The protections of the rape shield laws fall apart when dealing with someone who has this type of disability. As is well known, different forms of the rape shield statute were adopted across most of the country between the late 1970s and early 1980s, (Anderson, 2002) and the creation of a federal rape shield law was included in the passing of The Violence Against Women Act of 1994. (The White House Fact Sheet)
The rape shield laws were designed to defeat any negative conation that a victim’s prior sexual history might cast upon them. Past sexual history is never considered to be relevant and is not allowed to be presented as evidence. But this law does not often apply with victims who have cognitive disabilities, because of the emphasis on determining capacity to consent. Past sexual conduct can prove the victim understands the consequences of sexual activity. So rape shield laws are often dismissed. Then defense attorneys have a field day, evoking language about the cognitively disabled victim reminiscent of the Eugenics era. Either the victims are described as asexual or more often they are described as oversexed or hypersexual, as someone who does not know sexual boundaries, who has an “uncontrollable sexual nature.” (Block, 2000) The overall reasoning that is attributed to the victim’s “animalistic instincts” or prior “overly flirtatious behavior” is given as justification for the act and how it ended up playing out. This is no better than sanctioned victim blaming.
In cases of sexual assault, the presence of a disability is irrelevant. People with cognitive disabilities are just as able to present a truthful account as nondisabled people, the experience of being assaulted is just as traumatizing, and it takes the same amount of courage to testify. The lack of justice they receive is appalling. As Razack so eloquently put it, “…the stories of women with disabilities must be told, not as stories of vulnerability but as stories of injustice.” (Razack, 1995)
There is a double edge sword at play here in the sexual assault laws concerning people with cognitive disabilities since all sexual activity with them is considered illegal. On one hand, the positive notion of sexual desire from consenting individuals who have cognitive disabilities is demonized and those who willingly express their sexuality are criminalized for it. At the same time, however, if someone with cognitive disabilities is attacked and sexually assaulted, then the rape shield laws, designed to protect persons from having to explain their past sexual history, are null and void because the victim has cognitive disabilities.
No one doubts that the American with Disabilities Act is an important civil rights law. It mandates “unprecedented accommodation by both private and public actors to the needs of the disabled. In so doing, it takes an enormous step towards changing not only the legal, but also the moral significance of disabilities, marking the disabled as blameless and deserving of full social integration.” (Hiegel, 1994)
In the area of marriage among people with cognitive disabilities, examples mentioned at the beginning of the paper prove that their rights are often abridged by social stigmas. This disables them further, for the benefit of the vast majority who are too uncomfortable at the mere thought of people with disabilities engaging in sexual relations. What is lost by people with cognitive disabilities is the emotional freedom and life enhancement that comes from developing and maintaining healthy human relationships of which sexuality is often a vital part.
This paper has tried to illustrate the point that people with cognitive disabilities are misperceived in many ways, chief among them is that they only possess childlike tendencies and thus are unable to understand and consent to adult activities and situations in everyday life. While this may be true for some people, it is mistakenly applied to all people who have cognitive disabilities, thereby depriving them of basic constitutional rights.
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