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...

These are some of my thoughts while reading this article.  My thoughts, while not expert, are those of one who has both worked in the 'system' that cares for those with developmental disabilities and was shortly in the system as one receiving psychiatric care in large facilities.

Texas lambasted over care of mentally disabled

Justice Department accuses state of violating patients’ constitutional rights

DENTON, Texas - For more than a century, thousands of mentally disabled Americans were isolated from society, sometimes for life, by being confined to huge public hospitals.

In at least one place, they still are.

Texas has more mentally disabled patients in institutions than any other state, and the federal government has concluded that the state’s care system is stubbornly out of step with modern mental health practices.

For the third time in three years, the criticism has attracted the attention of the Justice Department, which on Tuesday accused Texas of violating residents’ constitutional rights to proper care.

Investigators found that dozens of patients died in the last year from preventable conditions, and officials declared that the number of injuries was “disturbingly high.”

In addition, hundreds of documents reviewed by The Associated Press show that some patients have been neglected, beaten, sexually abused or even killed by caretakers. Inspection reports also describe filthy rooms and unsanitary kitchens.

I wisht that I could say this sounds like a huge exaggeration, but... And these are the incidents that were reported.  So much goes unreported.

The American Association on Intellectual and Developmental Disabilities says large care facilities — usually those with at least 16 residents — “enforce an unnatural, isolated, and regimented lifestyle that is not appropriate or necessary.”

This is true.  Can you imagine living your life with 16, 45, 100, 300 other people?  These kinds of facilities create a class system, perhaps better described as a caste system, with the staff being known as higher and better than, while those residing in facilities are lower and 'less than'.  This (false) difference gets imprinted on both the soul of a resident and a staff member, which only the redemptive truth of God regarding one's true identity can remove.

Federal law requires the mentally disabled to be treated in “the most integrated setting” possible — a factor that led to the Justice Department rebuke of Texas. 

Integrated, meaning community integrated, and least restrictive.  This is a right of those receiving developmental disability services.  There are, or can be created, community-based programs for those even with the worst behavioral issues and the most profound medical concerncs. 

...critics allege that “warehousing” patients in large institutions invites abuse. Patients are isolated from their families and communities, making regular contact with loved ones more difficult. And caretakers often get overwhelmed by the large numbers of patients, Garrison-Tate said.

This is true.  Even the person who loves those s/he is caring for and believes s/he is doing his or her life's work, can become frustrated and succumb to abusive behavior.

In Texas, officials verified 465 incidents of abuse or neglect against mentally disabled people in state care in fiscal year 2007. Over a three-month period this summer, the state opened at least 500 new cases with similar allegations, according to federal investigators.

An AP investigation earlier this year revealed that more than 800 state employees have been fired or suspended since the summer of 2003 because they abused, neglected or exploited mentally disabled residents.

A side note- did ya notice this artcile says that the employeew who abused those in their care were fired or suspended?  Why no mention of criminal charges?

And in the one-year period ending in September, as many as 53 deaths in the facilities were due to potentially avoidable conditions such as pneumonia, bowel obstructions or sepsis, the Justice Department said. 

53 people- real people.

Some families tell horror stories of their loved ones in the state facilities. For instance, Michelle Dooley said her son spent three months in the Austin State School, which she described as a place of “dingy yellow floors and patients running around without any clothes on.” 

During his time there, he refused to leave his bed and often languished in his own excrement, she said.

Dooley eventually moved her son into a group home in Denton where treatment costs average about $50,000 per year — roughly half as much as the costs at state schools, Garrison-Tate said. Medicaid often picks up most of those costs.

“It was just horrible,” Dooley said. “If he goes back to a state facility, he will shut down and die.”

Speaks for itself.

Other families say they are happy with the state care.

Neil Davidson said his daughter Susan, who has cerebral palsy and is mentally retarded, has flourished during her 10 years at the Lubbock State School.

“I’m very impressed with the level of care she has received,” Davidson said. “As far as I am concerned, it’s Mr. Rogers’ neighborhood. Everybody is looking out for everybody else.”

I have no doubt that some of these facilities may provide some amount of good care.  However, even the best institution or large facility is no comparrison to home.  And if a home-like environment, such as one's own apartment or a group home is an option- why the heck not?

A visit to the Denton State School, the largest in Texas, reveals a sprawling campus spread across well-kept lawns. Superintendent Randy Spence described the place as a “happy, homelike atmosphere.”

Ha!  'Homelike'- whose home?

“The vast majority of our employees love the people they work with,” said Cecilia Fedorov, another spokeswoman for the Department of Aging and Disability Services. “They think of them as extended family.”

But Denton is also the site of Texas’ most notorious case of state school abuse.

In 2002, a care worker repeatedly kicked and punched a resident in the stomach and groin. Haseeb Chishty nearly died after that beating. He is now confined to a wheelchair and unable to feed himself or use the bathroom.

“It got to the point where it was fun beating him, torturing him,” said former care worker Kevin Miller, who is now serving 15 years for aggravated assault.

In a statement videotaped by Chishty’s lawyer, Miller said he and many of his fellow care workers used methamphetamines, cocaine and Oxycontin on the job.

Brokeness attracts brokeness.  Many, if not most who are drawn to care for people with disabilities, have themselves struggled with 'issues' that virtually all with disabilities have struggled with- abuse, rejection, feeling 'different'.  Unfortunately, many of those employees have not resolved their 'issues', and therefore, this case of assault and torture is a result.

Many of the institutions are large employers in small towns, and they often pay more than other jobs in rural areas. Lawmakers fear taking action that would lead to layoffs, Garrison-Tate said. 

"I'm sorry, we have to keep the system of institutionalization of some so others can have a job."  Is that it?  I'd imagine, if these facilities close, these empolyess could get a job in the comminty programs.  These people would still need care, after all, and, thus, need caregivers?  Am I being too simplistic?

“Even if we said we wanted to close all state schools, the community resources aren’t there at this time,” said state Rep. Larry Phillips, chairman of a legislative committee studying the facilities.

So, what are you doing about that?

Kelly Reddell, the lawyer whose client’s son was beaten nearly to death, said the state is not doing right by its mentally disabled.

“The very nature of the institutional setting, I think, creates the environment for the abuse to take place,” she said. “How in the world can you think this system is the best and it makes sense?”

Time for change is a long time comin'.

As a Christian, I am passionate about the sanctity of life.  In addition, as one with generally conservative political beliefs, the idea of a right to life for all in whatever state of life one finds oneself, fits those beliefs.  However, what do we, we Christians and/or we with conservative political beliefs do for those who have been spared from abortion or euthanasia and their families?

In an ideal America, I'd like to see the government involved as little a possible in its citizens' individual affairs.  This includes things like health care and caring for the poor.  In a republic, it is not the government's job to be the sole provider for both.  However, it has become so for those with disabilities, especially developmental disabilities.

We conservatives say we want fewer taxes so that we can give to charity directly through our churches or through other private organizations.  But will we really do it?  'Cause, we're not doing it now, at least not for those with developmental disabilities.

Every organization and agency that provides living and vocational services to people with developmental disabilities, including faith based organizations, in my state that I know of is dependent on Medicaid.  Medicaid has a LONG waiting list for those waiting to receive such services.  And, without adequate funding and cookie cutter programs, Medicaid often lacks in quality of those services.  Even so, faith based and other private organizations aren't stepping up to meet even the basic needs of those with developmental disabilities and their families.

Is the answer to increase Medicaid funding to better improve its services?  Only if we with conservative political beliefs or we who follow Christ don't step up and do our part.  Do as we believe. 

Most people with developmental disabilities over the age of 18 use Medicaid services.  This means that the state is heavily involved with their lives.  For instance, to ensure that quality care is given and Medicaid money is spent wisely, their caregivers turn in reports about their clients' daily activities, medical concerns, the kind of treatment given, behavioral issues, bowel movements... You name it, the state knows everything about anyone with a developmental disability receiving Medicaid services, which is almost everyone with a developmental disability.  In addition, the state must approve the kind of treatment given for those with developmental disabilities.  (Such would be the case for all citizens in the case of National Health Care, btw; don't think it wouldn't.)

This seems so wrong to me.  But there is no other option.

What did Sarah Palin mean when she said that parents of children with disabilities would have an advocate in the White House?  As her son grows, she will learn the headache of trying to receive enough of the right kind of education, health care, etc., for him, and when her son turns 18, she will become quite familiar with virtually the only option for him that is Medicaid.

Okay, fellow Christians and conservatives, if we really want less taxes and less government involvement, wake up!  We've got to start meeting the needs of those with developmental disabilities in other ways than just paying our taxes.  

I hope that Sarah Palin will become an advocate for life in Washington.  I hope that she'll bring Conservatives awareness, real awareness, of the needs for those with developmental disabilities before and after they turn 18. 

My mother chose not to abort me.  She could have, for I was born after 1973, the year abortions became legal.

Had she known that 32 years after my birth, I would have a lot of needs, that I would have struggled with obesity, identity issues, depression, obsessive compulsive disorder, going to school, fighting with my sisters, and not making my bed in the morning, should she have considered abortion?  Is she a hero for not?  Is she a fool for not?

It's a natural instinct for a mother to protect her child from the womb on.  It's sad when doctors, society, and fear keep a mother from doing what's natural.  Palin did what was natural for a mother to do when she was pregnant with her son.  'Special' needs and all.  It's not heroic.  It's what a mother does.  My mother taught me this.

No, this is not from the Onion (the satirical 'newsite').

From LifeNews.com:

Sarah Palin's Keeping Disabled Baby May Reduce Abortions Doctor Worries

A leading Canadian doctor is drawing gasps from people across the world with a comment that he worries abortions will go down because of Sarah Palin's story. The number two doctor at the national Canadian physicians group worries Palin's decision to keep her disabled baby will reduce abortions.

Palin's story of deciding to give birth to her disabled son Trig despite knowing he would be afflicted with Down syndrome, has been an encouragement to families with special needs children.

But it's bad news to André Lalonde, executive vice-president of the Society of Obstetricians and Gynaecologists of Canada.

"The worry is that this will have an implication for abortion issues in Canada," he told the Toronto Globe and Mail newspaper Tuesday.

According to the paper, Lalonde said that, "above all else, women must be free to choose" and that positive messages like the one from Palin "could have detrimental effects on women and their families."

Still, LaLone claimed his group doesn't encourage doctors to promote abortions to parents of Down syndrome babies -- even though statistics show about 90 percent of babies diagnosed with the condition become victims of abortion.

"We offer the woman the choice. We try to be as unbiased as possible," he said. "We're coming down to a moral decision and we all know moral decisions are personal decisions."

But Krista Flint, director of the Canadian Down Syndrome Society, also talked with the Toronto paper and said families feel doctors encourage abortions by stressing the drawbacks to a baby with special needs.

"It's very dark," she said. "They hear a lot about the medical conditions that are sometimes associated with Down syndrome."

Story continued at LifeNews.com.

From the Chicago Tribune:

Disability rights advocates and medical ethicists praised a precedent-setting ruling Friday by the Illinois Appellate Court denying a bid to sterilize a mentally disabled woman against her will...

..."Tubal ligation is a particularly drastic means of preventing a mentally incompetent ward from becoming pregnant," Judge Joseph Gordon wrote in the 36-page opinion. There are "less intrusive and less psychologically harmful [birth-control] alternatives."...

..."It's extraordinarily significant" because it guarantees the disabled a court hearing, said Katie Watson, a Northwestern University professor who wrote a friend-of-the-court brief in the case on behalf of about two dozen medical ethicists.

"In the past, this was a decision that could be made between a guardian and a doctor," she said. "The decision must be moved into the light."

The ruling means a guardian must go through some "significant legal hoops" before a court will order sterilization, said the woman's attorney, John Whitcomb of Equip for Equality, a disability rights group.

Yes, it really happens.  People with developmental disabilities experience housing discrimination.

I've shared my experience here in an older post, "How Do I Feel About That?"  Here's what's happening in Cicero, New York.

From Central New York News at syracuse.com:

Cicero Town Councilor Jim Corl and Town Supervisor Chet Dudzinski are calling for the state legislature to repeal a mental hygiene law that requires people with developmental disabilities who want to move into a neighborhood to seek town board approval....

...At the required public hearing, several neighbors of the proposed site objected, saying that having such a group home in their neighborhood would increase traffic, decrease home values and force them to keep a closer eye on their children.

And News 10 Now:

CICERO, N.Y. - Is a thirty-year-old state law discriminating against people with developmental disabilities? The Cicero Town Board thinks so. Their actions come on the heels of strong neighborhood opposition to a brand new neighborhood group home.

It would be along Snowshoe Trail. A home, established by Community Options Incorporated, for three men with developmental disabilities. The deal is as good as done. But not without concern.

"With all the kids around, can we trust these people coming in and out? Nurses, aides, therapists. Everyone is just going to be coming in and out. Increased traffic. It's just, it's not a good placement for this," said Karen Florczykowski, a Showshoe Trail resident.

Some neighbors share her sentiment. And some don't.

 

There is so much talk out there in the world about suffering.  There is so much talk out there about 'those people' who are *suffering.  There is so much talk out there about how to help 'those people' who are suffering by ending their suffering.  There is so much talk out there about ending 'those people' who are suffering.

The logic these days (these last days?), in this distorted world, is ending a person's suffering is worth ending the person.

I am wondering if we jump on the euthanasia, doctor assisted suicide bandwagon because we don't really know 'those people'?  They aren't in our lives.  I didn't know Mrs. Schaivo. 

What if I did?  What if she weren't just the woman I read about online or whose story I watched on the evening news?  What if she weren't the woman whose disability was described differently in each article or story, as if reporters or bloggers couldn't exactly explain what was 'wrong' with her?

What if she had been someone in my life, say a friend or a family member or a woman I cared for as a caregiver?  Would I be so easily tempted to talk about her in the abstract and form opinions about her based on different articles all written from different points of view?

If I had a relationship with Mrs. Schiavo, would it make it easier to recognize her life's worth, her dignity, and her personhood and do my very best to see that she has the best care and support and found a way to see that her bridge to Mrs. Schiavo and community stayed strong?  Or in my pain of believing someone I love was suffering, would I accept the distorted philosophy of euthanasia?

What if I had a relationship with Mrs. Schiavo's family?  Would I, in my fear of Mrs. Schiavo's disabilities, encourage her hurting family in the route of euthanasia?  Or would I offer real, practical support, by way of sharing in the care of Mrs. Schiavo and of the family?

What if relationship with people with serious and profound disabilities and their families took those with disabilities out of the abstract in debate about human life and made them real people to us?  Would we see ending their 'suffering' worth ending their lives?  Or would we find a way to relate to them in their suffering, and instead of trying to end it their suffering at any means, would we recognize suffering as a shared human experience?

*Side, but important note, many with disabilities do not see themselves as actually 'suffering' in the way that suffering is used in the media and politics.  They see their lives as normal, albeit with some hard things in their lives, but they resent that the rest of us see them as 'suffering'.

Does life have absolute value simply because it is human?

We have to answer that question.  We have to.  We have to.

We have to realize that bioethicists today, SAY NO.  We have to become educated, at the very least aware, of what the consequences have been and will be of them saying no!  We have to.

What do we say, Christ followers?  How do we answer this question?  A simple yes or no will suffice- for now.  It's a start. 

Most of us are already aware when we listen to God and let Him put His Truth in our hearts that the once taken for granted sanctity of human life is no longer a given, we will grieve for the life that has been lost, for the lives that will be lost, and for what our part has been.  And it will hurt.

I know, believe me, I know, it's hard to look at what's happening.  It makes us have to do all that 'thinking'.  I know it's 'uncomfortable' when we seek God's Truth in this matter because we have to 'feel stuff'.  We might offend people, even our friends, and be contraversial.  We might even be called to speak out, make a stand. 

You don't have to watch all of these videos.  They are of a lecture given by Wesley Smith at Trinity Law School on the value of human life and what is happening in the field of ethics today.  Watching all four will take 2 hours total of your time.  So, you don't have to watch all of both videos. 

But you do have to answer the question- Does life have absolute value simply because it is human?  You have to.

Today at church we had the opportunity to hear some testimonies from people who had experienced healing from God this week.  It was great to hear their stories of the power of God.

However, I was reminded, overwhelming so, of how much people with illnesses and disabilities are needed at my church.  Yes, in part to see the glory of God revealed when He chooses to heal some of them.  But also, to see the glory of God revealed when He chooses not to.

As the men and women told their stories of healing as quickly as possible with only so much time alloted them, focus and attention seemed to be only on the physical symptoms of their illness or emotional pain, with a quick declaration that God delivered them.  As if they were saying, on the external, God healed my body or delivered me from this sinful outward behavior.

I know there was much more to their healings than just the external, and, again they only had so much time to speak.  But what I need to see, as a member of my church, is what is happening with their hearts.  Where is their heart as God is healing them?  Where are they spiritually?  What is God doing in their sanctifying process of making them holy?  Is this physical healing a reflection of that transformation or is it something that God has given them for the sole reason of blessing them?  Will this physical healing press them into deeper relationship and trust with God?

In addition to those who have had physical healing in their lives, I also need to hear from people who still struggle with a physical or mental illness or a physical or mental disability, yet are being transformed into the likeness of God for the glory of God, in faith and trust that the grace of God is sufficient in their weakness.

Yes, God does heal people sometimes of physical disability, of the chemical imbalances of mental illness, etc., and for that we thank Him and praise Him!  But, He is not only concerned with the physical!  He looks upon the heart!  He may or may not choose to heal the leper, make the lame man walk, or give sight to the blind woman.  He does not promise physical healing.

But He does promise life and life abundantly, which is found in the graceful relationship with His one and only Son.  He promises new identity, freedom from sin, and transformed spirits. 

Savation is for everyone!

He goes even further and uses those He chooses not to heal for His glory in making the church better!  With the suffering around us, God gives us the gift of compassion and love- if we will take it.  With those who struggle with their physical bodies or mental disabilities who trust in the sufficiency of God's grace, we learn to rely on that same sufficiency in our own weaknesses or when our time for suffering comes.  And God gets all the glory!