M3A2: Analysis of Historical, Legal, and Ethical Issues
July 12, 2017
Analysis of Historical, Legal, and Ethical Issues
“Love is patient; Love is kind”—so the trusty age-old adage goes. Love is the universal additive or component that makes anything better. Whether we are talking about the added love that goes into a home-cooked meal or the added love that makes parenting excellence, it is difficult to deny that love is an important ingredient to almost anything or any relationship anyone can conceptualize of having. But in the case of parents with intellectual disability [ID], another famous adage comes to mind. Echoing on from a Peruvian Inca prophecy, “When the eagle of the North flies with the condor of the South—the spirit of the land she will awaken.”
A young girl named Mary Ann was raised by two parents with ID as explored in the video titled Is Love Enough? (Puchniak & Handel, 2001) in which we are able to witness the obstacles, current and past ideas, tribulations, joys, and heart-wrenching moments of all that being the parent with ID that is raising his/her child. Mary Ann’s story is remarkable in that she at once is a fair judge of the needed deliberation of such actuality, in that it is and has been her own life and upbringing.
This seemingly well-adjusted teen sits before the camera with a wisdom beyond her years, asking us to please consider not allowing people with ID to parent. This seeming oxymoron brings tears and begs many-a-question. As per the Peruvian Inca prophecy, Mary Ann would be the spirit of the land, the eagle of the North would be what we as a society deem is best for parenting, and the condor of the South would represent the seeming incredulousness of allowing a person with ID to parent a child. But ah, if they fly together … then what can we all come up with that may be best for all parties involved and for our societies at large? Is love of parent to child enough to constitute good parenting, or not? This is what this paper explores.
Historical, legal, and ethical issues are presented and touched upon in various ways in the video. Mary Ann sobers the audience with the following statement about her feelings about having been raised by two parents with ID:
“I love my life. I'm a very happy person and um… and I’m very grateful that… that my parents had me, but to be honest, if you take away my grandparents, if you take away all the support of people that I had in my high school, I wouldn't have turned out well at all, I don't believe, and I think that's just simply not fair. You can talk about the rights of the parents, which obviously they have, but you also need to consider what's in the best interest of the child, and having parents who just can’t give you what you need is not in your best interests (Puchniak & Handel, 2001).”
If our hearts are in charge, this exploration paper could end here, but exploring other vantage points is vital. We would perhaps like to say that as a society, we have come a long way when considering the differences from about a decade or so ago when the video that tells the remarkable Mary Ann’s story, but there are still issues such as acceptance, support, and different terminology that need to be furthered, more than just addressing. Our day and age does a great deal of touching upon topics, and somehow giving a salute that our mere doing so has somehow provided shrift with each other’s educated opinions.
Why do we collectively concur that it be tolerable behavior for us to believe this? The available literature is basically qualified people still giving their opinions and tagging the articles with their PhD status. No one seems bold enough to drop the gavel and pronounce what is and what will no longer be acceptable with regards to children such as Mary Ann. We deliberate with no end, fearing to look less smart or be less politically correct in the eyes of our professional peers. Someone must take a stand at some juncture. This mere touching upon the issue, just that we discuss it, is far too shallow; it does little to give the issue its due diligence in our qualified or caring collective minds. We must aim to be more responsible and address certain issues such as clarification of what our society defines or deems reasonable and proper when it comes to parenting and being a parent with ID. We must learn as a whole people when to allow feelings to make laws and provisions for the best of all of us and when to have to coldly set a boundary for necessary logic as well.
The level of causation is a good place to start when considering decisions of such magnitude as whether or not to trust a person with ID to parent. Intellectual Disability is currently defined as “… significantly sub-average general intellectual functioning, existing concurrently with deficits in adaptive behavior and manifested during the developmental period, that adversely affects a child’s educational performance (Center for Parent Information and Resources, 2017).”
Historically, in seems to be the consensus that, “For individuals with mild intellectual disabilities, the cause of the problem is not generally apparent. A significant number of these individuals come from families of low socioeconomic status and diverse cultural backgrounds; their home situations often offer few opportunities for learning, which only further contributes to their challenges at school. Additionally, because these high-risk children live in such adverse economic conditions, they generally do not receive proper nutritional care. In addition to poor nutrition, high-risk groups are in greater jeopardy of receiving poor medical care and living in unstable families (Hardman, 2013, p. 222).”
There is much to be gleaned from an epoch in the annals of our history with the sensitivity of our subject and the decisions that must be made still: “Times have moved on from Mickelson’s concern for informing methods to control parents with intellectual disability […] However, the conceptualization of their parenting as parenting in extremis remains today […] This is reflected in the three major themes in the literature which is now in its seventh decade […] The enforced sterilization of people with intellectual disabilities in the early part of the twentieth century is a practice which continues today in some parts of the world […] Despite this extreme infringement of human rights, people with intellectual disability have always become parents without regard for the merits or otherwise of their parenting (Llewellyn & Hindmarsh, 2015).”
Laws such as the Americans with Disabilities Act (ADA) and the IDEA influence these decisions, but the word influence doesn’t seem to be influential enough to firmly create. IDEA is immensely helpful in that schools must abide by this and facilitate our children/teens with ID to the best of their ability. The ADA seems like a pregnant baby that just took too long to be born, but is here to stay in our society in its good aims and good will. But, all in all, we are still exploring like mavericks of the Wild West in their wagons, whispering of creeks and farm land nearby, but without providing an actual visible map in the grand scheme of things.
A burgeoning diagnostic scale seems promising in the vein of hard results that will allow us a measuring point to utilize from which we can go on to decipher the grey zones from the black and white: “AAIDD’s Diagnostic Adaptive Behavior Scale (DABS) is under development […] The DABS provides a comprehensive standardized assessment of adaptive behavior, […] precise diagnostic information around the cutoff point where an individual is deemed to have “significant limitations” in adaptive behavior […] The presence of such limitations is one of the measures of intellectual disability (AAIDD - American Association on Intellectual and Developmental Disabilities, 2017).” DABS measures three different domains regarding adaptive behavior that we human beings use daily in order to properly function such as conceptual skills--like literacy and concepts such as counting money and how to tell time—basic functional social skills, and necessary practical daily living skills in individuals. The professional ethical principles that might apply to the situation are to adhere to IDEA and the basis of the ADA.
Two arguments exist: we are either for or against parents with ID being acceptable. Our mentor, Mary Ann, deserves a sort of “life-time PhD” due to her life being a classroom for what we deliberate about regarding parents with ID. Mary Ann ushers us to her way of thinking which clearly is that she does not give her nod to people with ID being fully capable of parenting fully. No child needs to feel burdened by feeling the innate need to be protective and take care of his/her own parents. Mary Ann confides in the audience when sharing:
“I've always had a sense of feeling like I need to protect them. Um… Um… If I feel for… for any moment that somebody is going to hurt them, or is going to take advantage of them, I… It’s almost an instinctive thing that I get in the pit of my stomach and just anger rises, just that I… that I need to protect them, that I need to… to… to make sure that they won’t get hurt, and that’s been there for as long as I can remember. It really is, I can only imagine that that would be a similar feeling to how a parent feels towards their children (Puchniak & Handel, 2001).”
This is also backed up by a logical comment made by Sue, a commentator, when she shares a dilemma that brings tears to most any audience member in its crushing hard cold truth. About Mary Ann’s parents, Sue says, “They have difficulty understanding abstracts […] So if you say, you know, you have to put food on the table for Mary Ann supper every night, they'll say great, they'll do it every night […] But when Mary Ann comes home in tears, because somebody has said something mean to her or she is frustrated, because she couldn't understand something in school or she… any of those things they couldn't understand (Puchniak & Handel, 2001).”
On the flip-side, “I would advise that social workers shouldn’t assume that just because a parent has a label of a disability means that they don’t have a right to be a parent,” he says. “The key issue is the ability of the parent to support their child and to manage that role effectively. Sometimes that may include the support of other people and that’s OK (Company & Getz, 2011).”
Also to this side of the situation, the choir of advocates nowadays that is in support of people with ID to be able to parent is not a small force not to be reckoned with: “Common myth is that parents with intellectual disabilities can’t learn the skills they need to be parents. In reality, they can learn with good teaching, good materials, and a lot of practice. Parenting is something you can learn, like anything else, she says. Building on strengths and breaking down the task into small parts—teaching each part—is important. A good teaching program uses pictures or video. The teacher doesn’t just talk or use printed materials. Good teaching also gives the student time to learn. One of the problems with parenting skills programs that are set up for anyone to take is that they go too fast. Parents with intellectual disabilities need to find a program that lets them stop and repeat the lesson if they’re not there yet (Company & Getz, 2011).”
“Parents face an increased risk of losing their children […] and that their children are more likely to be described as vulnerable […] Research has shown that the removal of children is often viewed as a consequence of parental incompetence but in reality it may be due more to lack of appropriate long-term support or specialist service provision […] Significantly, training programmes for parents with learning disabilities have been shown to be effective in increasing skills and competencies (Baum, 2016).”
It seems that parents with ID, no matter how dearly they love their children, just are not up to the immense task of understanding abstracts of life, i.e. being able to add up the whole sense of a child/teen’s situational life, behaviors, feelings, and attitudes. “Assessing minimal parental competence is a significant issue in the child protection system as there are no agreed definitions of adequate parenting and parental competence (Bromfield & Lamont, 2009).”
If children do not deeply feel understood, they do not feel safe in this world in general unless outside help of family and friends, of those qualified at schools and in their communities, come together to aid the situation and be stalwart in the way of loyalty, be an on-going trusted presence in their lives.
Regarding supports or interventions for the family, communities and their schools, I believe that Mary Ann speaks the loudest when we consider her own sobering credentials:
“The issue is not people with developmental disabilities having children, it’s whether or not they can actually do what they need to do to be good parents to them. And so, I… if… if there were social workers that could be there 24 hours, then… then I would say go for it, but the reality just is that there isn’t, and that does sound very hypocritical, but um… I don’t think people with developmental disabilities should be having children at this point in time (Puchniak & Handel, 2001).”
Mary Ann’s testimony to the audience is not current opinion, however: “People with ID have the right to make decisions about having and raising children and to have access to the proper supports on an individual basis to assist them in raising their children within their own home […] While parents without disabilities often receive support and ideas from other parents, those with ID typically are unable to obtain and develop such relationships that provide natural support […] Other supports provided through government programs or non-profit agencies are also scarce in most communities (ARC, 2016).”
In so far as our current thinking regarding those with ID parenting, as we pick up our pens, paper, and ink and continue embarking upon resolutions for the heart and gut-wrenching decisions that we must come to make now and in the future for our children that are being parented by those with ID and other exceptionalities, the question of love still persists. Mary Ann comforts and confounds us in her own words if we are to grant those with ID the right, the privilege, and the responsibility of parenting their own children. Mary Ann comforts and further insulates our persistent confusion in this way, emoting a certain promise at the end of the day for decision-makers: “I don’t really regret anything that I've done, because everything that I have done has made me who I am and I think despite everything that I've turned out okay (Puchniak & Handel, 2001).”
God bless and keep sound of mind and impeccably sane of heart the law-making citizens and our judges that rule over them, in our well-meaning United States of America.
AAIDD - American Association on Intellectual and Developmental Disabilities. (2017). Diagnostic Adaptive Behavior Scale. Retrieved July 9, 2017, from http://aaidd.org/intellectual-disability/diagnostic-adaptive-behavior-scale#.WWZra9PLYfw
ARC. (2016). Resources: Parents with intellectual disability. Retrieved July 8, 2017, from http://www.thearc.org/what-we-do/resources/fact-sheets/parents-with-idd
Baum, S. (2016, February 18). Parents with intellectual disabilities. Retrieved July 9, 2017, from http://www.intellectualdisability.info/family/articles/parents-with-intellectual-disabilities
Bromfield, L., & Lamont, A. (2009, December). Parental intellectual disability and child protection: Key issues. NCPC Issues, No. 31. Retrieved July 10, 2017, from https://aifs.gov.au/cfca/publications/parental-intellectual-disability-and-child-protection-key-i
Center for Parent Information and Resources. (2017). Intellectual disability. Retrieved July 9, 2017, from http://www.parentcenterhub.org/intellectual/
Company, I. G., & Getz, L. (2011, November/December). Parenting with intellectual disabilities — changing times. Social Work Today Vol. 11, No. 6, p. 14. Retrieved July 8, 2017, from http://www.socialworktoday.com/archive/111511p14.shtml
Hardman, M. L. (2013). Human Exceptionality: School, Community, and Family, 11th Edition [VitalSource Bookshelf version]. Retrieved from https://bookshelf.vitalsource.com/books/9781285594972
Llewellyn, G., & Hindmarsh, G. (2015, February 26). Parents with intellectual disability in a population context. Retrieved July 12, 2017, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4408356/
Puchniak, T. (Director), & Handel, A. (Producer). (2001). Is Love Enough? [Video file].
Filmakers Library. Retrieved July 11, 2017, from Academic Video Online: Premium.