This is an excellent article on a father's perspective regarding the right of his son, who has autism, to sexuality and to sex. 

Because this is not a Christian article, it made me think, what would a Christian perspective be on the subject of sex for people with developmental disabilities?

Legally and ethically, an adult with a developmental disability has the same rights and responsibilities to sexual activity as does anyone else.  The only way this right can be interfered with is through proper legal channels due to concern that the person may not be able to consent to sex or because the person's sexual behavior may be predatory toward others. 

Please understand.  A man or woman with a development's disability is not a child.  He or she has passed puberty and is a sexual being.  As do the rest of us, a man or woman with a developmental disability has the right to choose what he or she does with his or her sexuality.  To choose his or her own morals and to act on them.  Our responsibility as caregivers and loved ones is to educate and protect- but we cannot, nor should not, forbid sexual activity, unless someone is immediately being harmed.

What about the Christian man or woman with a developmental disability?  How do we, who have been given permission by this person, mentor his or her sexuality?

I haven't had the opportunity to do this yet.  My experience in the sexuality of those with developmental disabilities has been in a secular setting, where all I had to offer the person were his or her legal rights, counsel on choosing his or her own morals, and counsel on the physical and emotional consequences of sexual activity.  (The nurse was supposed to explain the, um, 'mechanics'.)

I look forward to walking this out with someone one day, not just from a 'Christian perspective', but from a relational perspective, based on the personal relationship between God and the woman I would mentor.  I look forward to affirming her personhood by affirming and protecting her sexuality and inviting her to surrender her sexuality to God.  And I look forward to the good things God will do through her sexuality. 

I look forward the woman making her own decisions about sexual activity as much as she is able, based on what God has taught her through His Word.  I look forward to her deciding for herself to choose God and His laws and deny her flesh unless married, as all of us single women must do, through the power of the Holy Spirit, through which is our only ability to do such a difficult thing.

I look foward to offering her grace and assuring her of God's grace and forgiveness should she fall.

One day soon, I hope...

Surgery broke the law @ CNN.com

Ashley 2

"Washington law specifically prohibits the sterilization of minors with developmental disabilities without zealous advocacy on their behalf and court approval," said Mark Stroh, WPAS executive director, in a statement.

"I absolutely agree this procedure should have been reviewed by a court," said medical bioethicist Arthur Caplan. "There was not enough due process to look out for the young girl's rights, so I think that was a severe failure in deciding to do this procedure."

Some disability rights advocates say they believe the Ashley case sends a clear message about the rights of the disabled.

"The implementation of the 'Ashley treatment' raises serious concerns about the continuing discrimination faced by people with disabilities -- discrimination which is often based in stereotypes about their potential and value as individuals," Stroh said.

Disabilities attorney Stephen Rosenbaum agrees. "I have a lot of compassion for this family. And I'm not here to shoot darts at them," he told CNN's Paula Zahn. "But they should know that Ashley has a right to develop as a human being."

"Ashley's smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc."

So, radical surgery was their answer.  No fighting for church and community support?  No home health aides to come into Ashley's home and assist the family with her care?  No acquiring mechanical lifts that are available to transfer an adult from her bed to her chair to the shower, etc.  No learning safe transfer techniques that exist already without the use of expensive mechanical lifts.  No trying to find ways to help Ashley deal with her normal fears of blood and menstruation.  Radical, invasive surgery was their answer.

My fears for Ashley are that with her small size, she will be even more vulnerable to abuse.  If she were allowed to grow to her rightful size, she would not be seen as prey as easily as a woman who looks like a child, and she would not be as physically hurt if someone were to harm her. 

In addition, I fear her she will ever be spoken to as a child, handled like a child, and thought of as 'less than', because often that is how we think of children.  Spoken to and handled as a child for a teenager and adult is not only undigniying, it affects how the person treated as such sees him/herself.  Perhaps Ashley will always see herself as a child and accept the lie that she is different than other people. 

Perhaps she won't.  Perhaps she'll have that feeling inside her that many of the people with profound cognitive and physical disabilities that I have known will have, the feeling of the truth that she is not 'different than', and that she wants to grow and change, like every human being.  Then because she will may not have the cognitive awareness to know exactly what that truth means or the communication skills to express that truth, she may communicate her frustration in 'behaviors', such as noncompliance with caregivers, mood swings, and aggression toward herself or others, if she is able.  This will result in psychotropic medication, and a Pandora's box of psychiatric treatment.

Are we as the Body going to leave people like Ashley to fight for their own dignity via their 'behaviors', or are we going to step up, and recognize their dignity and personhood and worth soley based on the truth that they are fellow image bearers of Christ?

Doris

This is Doris.  I worked with her toward the end of her life.  She reached her early 70's, quite a feat for a person with Down Syndrome.  Without much thought we treated her as we would have any fearful and fragile senior citizen.  Spoke to her gently.  Helped her to her rocking chair in the living room every evening, put a shawl on her when she shivered.  Of all the residents in the group home where she lived, we, both staff and residents alike, were the most respectful of Doris simply because she was older.  It's a natural thing to do with the elderly.  The oldest in the room gets the most respect.  The fact that she had profound mental retardation didn't come into play in the respecting of our elder Doris.

But what if she didn't look as old, if she were 70 but with a strange look (and she would look strange) of a child, how would we have treated her then?  Would we still have respected her 70 some odd years of life, able to see the evidence of her years clearly in her normally developed body? 

If people with disabilities are to be included in all aspects of society, and if they're to be respected and valued as our fellow citizens, we must stop 'treatments' that keep them vulnerable and different.

Okay, this is a long video.  8 minutes, give or take.

We wonder, or at least I do, all the time, what those with cognitive disabilities who are unable to communicate (or so we think) are thinking.  What do they think about their care, their rights, their disabilities, their lives?  What do they think of 'hot political issues'?  What do they think of how they're viewed in society?

Of course this woman doesn't speak for every person with a cognitive disability, but wow, she speaks for herself.  I love listening to her.

Even if this is a hoax of some sort, the words are worth hearing.  They ring true.

So, this is a long video, but stay with it and watch the second part.

In My Language

4 comments

I write a lot about my feelings and opinions concerning people with developmental disabilities, their place in society, and the role of the Church.  I mix facts, my emotions, and my own form of gut-instinct, some sort of 'knowledge of truth' we all have deep inside us, one that I hope is based on Biblical truths.

I am concerned I may appear arrogant in my stances of what I feel is true, especially concerning Ashley, the little girl who had her uterus and breasts removed and is being given hormone treatment to keep her from puberty and halt her physical growth.  I write, I've noticed, in such a way that may imply that I feel "This is right/wrong, this is the way it should be 'because I say so'".  In fact, I may be arrogant.  I don't know, but I do not try to write from a place of arrogance but instead from a perspective derived from personal experience.

From my personal experience, I have had the opportunity to serve people with developmental disabilities in the role of caregiver for almost 7 years.  Though 'caregiver' sounds odd.  It has actually been less than a job of giving care and more of a position of teaching the individuals I've served to care for and take responsibility of themselves.  (Literally, the old adage, "Teach a man to fish...")  Before that I'd had friends in childhood with special needs.  Really these individuals have been in my life always.

However, in my 'work' as 'caregiver', while I have known a few teens with developmental disabilities, most of my experience and relationships have been with adults.  I have gotten to know some of their families.  I have also done a lot of training of other 'caregivers', both experienced and new to the 'field'.  Through training others, I feel I have gained insight in how others prejudge mental retardation and demonstrate prejudice against adults with mental retardation due to the life long learned misconceptions even those with a desire to serve those with developmental disabilities bring to the training room.  I have had to examine my own prejudices and very heart, and I learn and evolve in my understanding every day.  I am no expert.  I just want to talk about what I feel, and share what I have learned.

As I've said, my experience is with adults.  There is a difference between working with adults with developmental disabilities and working with children with developmental disabilities.  (I bring this up because of my previously posted opinion of 'mental age'.)  With children, they are just that -children.  Learning, growing, cute, being educated, subjected to the authority of adults like parents, teachers, caregivers, etc.

Adults are not cute.  Some are enjoyable in the way that cute is enjoyable, if that makes sense, particularly those with Down Syndrome, but they are not actually cute little kids.  Some appear child-like, like those with Cornelia De Lange Syndrome because of their small stature.  Often times their bodies are just as normal as other adult's.  Sometimes not, for many in addition to mental disabilities also have physical disabiliteis.  Some have deformities.  Some are so far the opposite of cute that they are in fact out and out detested by society, particularly those who've had experience in an institutional situation because of little or no socialization. 

That's off track... a little.  Adults are still learning and growing, of course, but not so much in the 'learning the abc's' sort of way.  Not that it's ever too late to learn the abc's nor wrong to try to teach adults with developmental disabilities things like that, but adults need to learn more adult focused and practical things, like vocational instruction, life skills instruction, such as cooking and personal hygiene, at whatever level they can muster, and generally being as independent as they can possibly be. 

Unlike children, adults with mental retardation are not subjected to anymore authority than anyone else, such as the authority of the law, that of their employers, etc..  Though we provide instruction for skills, we caregivers are not their 'boss'; they have a right to refuse our instruction.  Their parents or other family members may in some cases have guardianship of their family member with disabilities for things like money management, medical decisions, and other limited legal issues, but they don't have legal say in their family member's everyday activities, like which jobs to apply for or whether or not they may attend an R-rated movie.

The adults and teens I've worked with struggle to find their independence.  Some have been so used to being told what to do all their lives that they don't feel they have the ability or authority to make their own decisions.  This leads to a sense of hopelessness and purposelessness, which leads to depression and child-like dependence on others.

Some rebel against the idea that they cannot make their own decisions, particularly, of course, when they aren't given the opportunity to.  This comes out in what we 'in the biz' may consider 'behavior problems', like physical aggression, self-injury from sheer frustration, and noncompliance.

Some revel in their lives despite their circumstances.  They contribute to society whether monetarily by gaining employment, socially by the way they affect and change those they are in relationship with, things like that.  They strive for independence.  They have conflicts with their families regarding that independence just like most of us have had.  They are eager to make their own decisions whether it be to move into their own home or choose their own salad dressing, depending on their level of ability to function.  (I mention choosing salad dressing thinking of a woman my coworker worked so hard with, a woman with profound mental retardation who after months of work was finally able to point out which salad dressing she desired.  It was very exciting; she had found her voice.)

So, when I look at a child like Ashley, I see the adult she will be some day.  One who will have battled things like dignity because she'll have been regarded child-like by most people because now even her body seems to match that misconception.

I think of all the child-like adults I have known who cannot stand being considered 'child-like' as exhitibed either by rebeliousness, independence, or hopelessness.  I think of all the adults, every one having gone through puberty and while their sexuality does not define who they are, it is a part of who they are, a part of us that is given to us by God. 

Just like the rest of us, they struggle with it.  Some dramatically.  Most normally.  But it's their right, none the less, to join that human struggle.  Who has the right to deny anyone such an important, normal life experience?

I am not naive.  I have known many adults with profound physical and mental disabilities.  (People especially seem to take exception with these individuals, seeing them as 'eternal children', even when they don't see others with lesser effects of disability.)  Indeed, why is it wrong not to 'allow' someone who will never have children to go through puberty?  One reason, among others, but the best I think, is that there are no exceptions to human rights and dignity and gifts of God; puberty and sexuality are gifts of God.

These are my feelings.  These are my gut-insitct truths.  This is not all I have to say about any of this, so expect more.  I am choosing my salad dressing, i.e., finding my voice. 

This is from L'Arche's website.  L'Arche is "an international organization of faith-based communities creating homes and day programs with people who have developmental disabilities."  Their statement may be kind of long, so I highlighted the parts of this I liked and found reason in to post here.

L'Arche Canada Questions Ethics Used to Justify "Ashley Treatment"

January 15th, 2007

L'Arche Canada - Communications

In the past several days much media attention has been given to the case of a nine-year old Seattle girl named Ashley who was born with static encephalopathy and unable to develop intellectually beyond the age of three months. Her parents, with the support of doctors and ethicists, opted for surgical intervention and hormonal treatments that will keep her small and prevent her from growing into an adult woman. Her uterus and breast buds have been removed and estrogen injections are ensuring she will remain for her lifetime around her present weight of 75 pounds. Ashley's parents explain their primary concern in this decision was Ashley's comfort and quality of life, especially as she grew heavier and it would no longer be possible for them to care for her themselves at home.

It is difficult to sympathize with the ethicists and medical doctors who are now promoting the so-called "Ashley treatment." Ashley's case does not exist in isolation from human society, and it raises profound ethical and social questions. With the possibility of "designer babies" already on the horizon, it should call us to a much more rigorous public conversation about values and where there is and where there is not a place for medical or surgical interventions. Alarmingly, even before these questions have fully surfaced for discussion other parents are seeking this treatment for their children with severe disabilities.

The term "slippery slope" is often dismissed as fear-mongering, but the fact is that a medical and ethical precedent has been set. We cannot measure the loss to the quality of our humanity as a society that will result from such manipulation of human life and growth.

Also, the implications of condoning the permanent infantilization of a person with a disability are of grave concern with regard to the safety and respect for the dignity of other people born with significant disabilities. People with disabilities have fought hard to change the cultural images which portray them as childlike and passive � images that only serve to further limit their options for friendship and work and to be contributing citizens. This "treatment," if it comes to be regarded as acceptable, will only reinforce these inaccurate and demeaning stereotypes.

For the family of a child with an intellectual disability there are usually three broad concerns that will determine the extent to which he or she is able to live the fullest life possible: (1) The quality of care and community around the child. (2) The cost of caregivers and practical and technical supports the child will need. (3) The suffering they fear may befall their family member as he or she grows to adulthood without the full range of abilities and mental facility of other adults. Fear that their child will suffer can cause families to limit their children's options.

Ashley's parents, who have resolved to keep Ashley at home for their lifetime, apparently had in mind all three of these concerns in making their decision. At one point in their blog* the parents explain, "We tried hard and found it impossible to find qualified, trustworthy, and affordable care providers." The medical ethics of this case, and the fact that there are other care-giving alternatives aside, this comment strikes at the heart of the pressing need for adequate funding for people with intellectual disabilities. This too is an ethical situation for which we must take responsibility as a society. The challenges parents of children with special needs face are often hidden. Along with the everyday joys of living with their child, many engage in a wearing struggle for financial assistance to provide the care and support that their child needs, and usually they do this with great devotion and enormous self-sacrifice.

As children develop, there are other living options. The experience of L'Arche� over forty years in hundreds of situations around the world is that people with a wide range of intellectual and, often as well, physical impairment, can grow to adulthood, flourish, and nurture those around them. For this to happen we need to accept that vulnerability, limitations and even suffering are part of life and growth.

Take Karin** for instance, whose needs for life-long total care are similar to Ashley's and who moved into L'Arche from a nursing home in her early teens. Karin is able to do nothing for herself and receives her food from a tube, but she has grown into a beautiful young woman. Lifts, a special wheelchair and a wheelchair van, and people around her who are attentive to her need to move frequently and to be well-cared for physically, enable her participation in her household and in the wider community. She has genuine friends who like to spend time with her, and she is a member of a dance troupe. Her presence on stage is captivating as she twirls in her wheelchair with her partner. Through her smile and facial expressions Karin seems to convey the full range of human emotions, from love and compassion to fear and anger. One wonders if Karin would be able to do this had she been denied the opportunity to go through puberty. L'Arche is by no means alone among good services for people such as Ashley and Karin.

We have a tendency as a society to deny disability, as well as aging, and to hide from the reality that we are ultimately powerless and quite fragile beings who need each other. Our lives are a remarkable gift entrusted to us and to others for an uncertain number of years. The person with a severe physical or intellectual disability is put more at risk in a society that is not rooted in awe before the mystery of life itself.

* Ashley's parents' blog is at: http://ashleytreatment.spaces.live.com/blog/

** The name has been changed to respect this young woman's privacy.

This is from Jeff McNair's blog Disabled Christianity which I've referenced once here.

Comments about the Ashleys of the world 

Regarding the story of the little girl Ashley, demeaned with the name, "pillow angel" a term which from a normalization perspective is sick in and of itself, I would like to make two points.

First, we cannot marginalize people and then criticize those who are left alone to care for marginalized people for their decisions. I wonder if the the adults in Ashley's life felt supported in her care, anywhere. Sure the wrongness of the surgeries stands on its own merits. We can criticize them. However, if we hope to avert a rash of such medical treatments toward people who inconvenience their families by their very lives, the community, and I would say the faith community, the Christian Church needs to come along side of those families and individuals who face the challenge of severe disability in their lives and provide support. Why aren’t the little Ashley’s of the world in the Sunday School classes of most churches? Yet we will criticize those who perform abusive surgeries. Where is the church at the birth of such children? Yet we will criticize the decisions of those facing the birth of a child with a disability who choose abortion...at least as a church I hope we will be critical of such people (I'm not sure we actually are). Obviously, the laws are not going to prevent families from stopping tube feeding, or performing radical surgeries on family members. However, if we as the community provide support to people challenged by the unknown of disability in their lives, those faced with the kinds of decisions the medical profession increaingly offers, will be less likely to abort, or create people who are further disabled by surgery, because they do not see themselves as facing their challenges alone. They see the experience of others in their community whose child with disability may be a value added to their families, or their churches or their communities. But those children have to be present and they have to be supported to change the minds of people tempted to do the wrong thing.

Second, the decisions relateive to performing the procedures on Ashely were condoned by a group of medical ethicists at the hospital where the surgery was performed. Well, medical ethicists are lost. I would love to know, for example, how many of those on the medical ethics committee who made the decision to go forward with the surgery, even know a person with a profound cognitive/physical disability. I wonder if any have friends with such disabilities. I wonder if any ever spent the day with a person with a severe disability. Decisions are made on the basis of ideas ethicists have about who those people are, and I would suspect they have largely never gotten past the notion of people with disabilities as “other.” My goodness, the medical profession has become rabid over down syndrome being prenatally diagnosed and those detected being aborted. These doctors are listening to medical ethicists when they say such abortions are humanitarian because they prevent a suffering, or poor quality life.

So lets point out the madness of the reasoning, and the surgery, and those who defend decisions by medical ethicists. But lets also take away the argument that the families faced with the challenges of raising children with severe disabilities are in it alone, by coming alongside of such families with acceptance and support.

McNair (fcbu)

Posted by: The Editor in Chief / 1/24/2007 01:41:00 PM (1) comments

I wanted to address the happening of the medical treatment given to the nine year old girl, Ashley, to keep her from growing.  Here are some others' opinions, like that of the American Association on Intellectual and Developmental Disabilities  , the people at Not Dead Yet, and Ashley's father.

Here is mine, right now.  The words that have formed so far, anyway.

While I disagree with her parents' decision, I still respect her parents.  In my disagreement I hold no malice, for indeed I do not know what it's like to care for a child with this profound of a disability.  I believe their intention is to do right by their child, but I believe their decision is based on a false belief that due her disabilities, their daughter is an eternal child.

Long made to feel ashamed of their family members with cognitive disabilities (i.e., mental retardation), members who were essentially dehumanized by society, in the 1950's, parents of children and adults with cognitive disabilities began to advocate for their children.  They demanded the same educational opportunities afforded other kids and were among the first to create sheltered employment workshops for their adult children.  They bravely brought their children's plights attention and advocated for their children's rights.  Surely, they are to be commended.

However, perhaps because it was the voice and perspective of parents being heard, that is why the public today views those with cognitive disabilities as 'eternal children' or adults with cognitive disabilities having the 'mind of a child'.  However, in fact, there is no such thing as an 'eternal child' and adults with cognitive disabilities do not have the 'mind of a child'.

First of all, and this will sound offensive, think about what a child's mind really is.  Growing.  Learning fast.  This is not to imply that those with cognitive disabilities do not learn or grow.  On the contrary, like any human being, they learn and grow throughout their lives.  That is my point.

The controversial (controversial because there are many of us who think this term should be thrown out and the category of a person's level of developmental delays referred to as something else) concept of 'mental age', a label, if you will, given to men, women, and children with cognitive disabilities, is a confusing term.  It implies that a 40 year old woman, for instance, with the 'mental age' of a 5 year-old is like an actual 5 year-old.  This idea is absurd.  She has 40 years of life experience, which, though her communication of her experiences may be limited, like any 40 year-old, the wisdom attained from those 40 years is still valid.

Her body is 40 years-old; she is close to middle-aged, probably wearing glasses now.  She is spiritual, with a concept of God, in her own way rejecting or accepting that God.  She is sexual, attracted to members of the opposite sex (or same-sex, as many with developmental disabilities also struggle with same-sex attraction) with the same sexual urges, rights, and moral responsibilities as anyone else.  She is a citizen, with the exact same legal rights as anyone else, whether they're actually protected or not.

She desires what any forty year-old desires, friends, a sense of purpose (usually found through a job, volunteer work, or simply more independence).  Maybe she does like cartoons, and maybe she cries when she doesn't want to take a bath.  However, that doesn't in any way make her less of a 40 year-old woman than any other 40 year-old woman.

The reason I say all this is because I think that the real reason behind this medical treatment given to Ashley is because people are stuck on the idea that Ashley will forever be a child.  I know she has profound cognitive disabilities, profound physical disabilities, and profound developmental delays. 

However, one day, she will be a 40 year-old woman, who will seem to have the mind and body of a child.  But it won't be.  It'll be the body of a forty-year old woman, with 40 years of life experience, with the same rights as any forty-year old who never had the chance to consent to the loss of her physical womanhood.  (I say physical womanhood because real womanhood, like real femininity, is on the inside.)