The Ashley Treatment- Four Years Later

Four years ago, the story broke about a nine year old girl who, three years earlier, had undergone growth attenuation surgery and had had her uterus removed. This was not done for any medical purpose, but rather it was done to intentionally keep the girl from reaching puberty and to keep her from growing to be more than 75 pounds. Ashley has a profound developmental and cognitive disability. Deemed the "Ashley Treatment", this surgery was performed so that her parents could care for her easier. It was later found that Ashely's rights were violated by sterilizing her without a court order.

So, Ashley, you're what, about 13 years old now? And you've been denied puberty. I know it's not this surgery that has denied you the social aspects of adolesence. I know it's your disability that keeps you fom school dances and middle-school-hallway-"who's that cute boy?"-gossip. And I know it's your parents and others referring to you as 'pillow angel' and seeing you as some sort of mental infant that keeps people from understanding that, chronologically, you are not an infant and, theologically, you are not an 'angel'. And I know that because 'ethically confused', to put it politely, doctors decided to remove your uterus, your body will never mature, a deception in that you ARE 13 years old.

I know how difficult it is to provide physical care to a fully grown adult who has no ability to assist in any part in his own care. However caring for such individuals can be and is done all the time. And, with technology progressing, it's getting easier. I fear this surgery was performed on you, not because it makes caring for you easier, though, that was probably your parents sincere intention. Rather, I fear society allowed this surgery because of our ignorance about and prejudice towards people with disabililities as profound as yours.

You are not an infant, you are not any kind of angel (nor demon), and your needs are not any more 'special' than anyone else's. You are not a 13-year-old with the mind of a baby- you are a 13-year-old with a profound disability. You are not to be laid on a pillow to be cooed at or gazed at like we do with a newborn. You have the life experience of a 13-year-old girl, which should be respected, with a wisdom about life that is uniquely yours, whether you can ever express that wisdom or not.

You're called a 'pillow angel', but you are neither an angel nor a demon; you are a human being. You have been created in God's image just like every other human. You are no more of a sinner nor any less of one, no more nor any less in need of a Savior.

Your needs- to eat, to breathe, to love and to be loved- your need for Jesus for the forgiveness of your sins and for hope- are just like anyone else's. You may need more assistance than others in having those needs met, but your needs are the same as my needs. They're just not that special- and we don't have to keep you small and attempt to deny your sexuaility to better meet your needs any more than we do mine.

Ashley, because of your disability I know that you may never understand the indignity that was done to you. But, I know- and it really hurts my heart. I just wanted you to know that I see you- you- as a young woman. You are female. You are one of us, one of the gang. Women with profound cognitive disabilities are created to reflect God's image in their femininity as much as women without them.

And femininity is not all in the body- it's in the soul, in the spirit God gave you. You can still reflect beauty, mercy, and grace. THAT no doctor or hospital ethics committee can take away from you.

Christians, Respect People with Developmental Disabilities

New York's Office of Mental Retardation and Developmental Disabilities will now become the State Office for People with Developmental Disabilities, leaving Rhode Island with the only state agency that still uses the word 'retardation' in its title. Using 'People with Developmental Disabilities' in the title is an example of People First Language, and it is hoped that the services offered will reflect the idea of putting the person (with the disability receiving services) first.

Though they are political in that they are used by state agencies to describe who receives certain state services, the terms 'developmental disability' and 'intellectual disability' are not simply the new politically correct terms for 'mental retardation'. For one, the term 'developmental disability' describes an array of disabilities. But, even more so, I think I could pretty much say as fact they exist because of the slanderous and hurtful way people began using the words 'retardation' and 'retarded'.

However, the term 'retardation' may have a similar history. Remember, the terms 'idiot', 'moron', and 'feebleminded' were once valid medical terms to describe what the still medical term of 'mental retardation' is today. But what we've done to those words, we've done to the word 'retarded'. They've become terms to describe something we despise and see as the lowest form of human characteristic- low intelligence. Gasp! Heaven forbid, we be seen as 'stupid', 'moronic', or 'retarded'!

So, I suspect, rather strongly, that once the terms 'developmental disability' and 'intellectual disability' become commonplace, it will be a common theme to hear 'developmentally disabled' or 'intellectually disabled' thrown at one another on the playground, imported into the stand up comic routines, or cursed at our remote controls when we can't get them to work. I'll use these new terms, but I don't think another term is what we need. What we need is respect for people with this particular disability- then we won't need to keep changing the words used to describe it every 30 years.

Respect people with developmental disabilities. Am I just moralizing? Expecting the world to follow my opinion of what is 'right' and 'wrong'?

I don't expect the world to follow anything 'right'- though sometimes they do, as is evident in the State of New York's attempt to be respectful of people with developmental disabilities. The Law of God (the 'right') is written on man's heart (Romans 2:13-15), and sometimes the unregenerate human follows it. But, by nature, man is also a sinner who can be expected to do what sinners do- sin or the 'wrong'.

But, Christians, those who've, by God's grace, repented of sin and trusted in Christ for forgiveness, have a new nature, and can now be expected to do what Christians do- 'right'. It is right to respect those with developmental disabilities. Love thy neighbor. Take care of the weak. Defend the cause of the poor and the needy. You know the verses. Christians are expected to do these things- not for our salvation, but as evidence that we've been made new creatures.

Who are these people to be respected, these people with developmental disabilities? Out of what theme are they to be respected? People with developmental and intellectual disabilities are men, women, and children who've been created in the image of God, who've been separated from their Creator by sin, who've been purchased back by Christ at the Cross, who, when called to repentance and the forgiveness of sin are justified and have the hope of eternal life free of sin, sickness, disability, and death through Christ's resurrection, and have the same new nature as and belong to the exact same Body as every other Christian. Sound familiar? Sound like you?

Who are these people to be respected? Your brothers and sisters. Out of what theme? The Gospel.

By nature, the Law of God is written on our hearts. Through the work of Christ at the cross and the regeneration and sanctification of the Holy Spirit, Christians can now do this Law naturally.

Christians, respect people with developmental disabilities.

Ending Suffering by Ending the Person Suffering?

The prevention of suffering is Aleksandr Nikonov's main argument in his article, "Finish Them Off, So They Don't Suffer" for a Russian tabloid magazine. Using a most derogative Russian term 'debil' to describe people with developmental disabilities, he makes a case for what he calls 'postnatal abortion', and what everyone else calls infanticide, for children born with them.

From the article:

"Let me introduce myself: I am Adolf Hitler. This is the way people want to portray me," Nikonov says. "But the real bastards are those who tell me, 'Yes, it is good and fair that people are in pain. We'll look on and say people can suffer, as long as our scholarly conception of humaneness is not affected.' To hell with you. People shouldn't suffer. This is my opinion, and you won't shut me up."

Wow. "People shouldn't suffer." What a humanitarian. As if those who would prefer the murder of children remain illegal are in favor of human suffering?

No parent watching the torment caused by Hunter syndrome rack her child with pain is in favor of suffering. No fellow church member of a child born with NKH whose heart breaks with her parents' at hearing the news that the little girl is having multiple daily seizures is in favor of suffering. And no friend of a man with Down syndrome who hears him being called 'retard' within ear shot at the mall or reads that a Russian journalist chooses the most offensive word possible to describe those whom he deems suffering, causing hurt and suffering, while decrying they shouldn't suffer is in favor of suffering.

We all want to end suffering. That's why scientists work on cures for diseases. That's why people become doctors and nurses. That's why ABC banks on the tv series Extreme Home Makeover. No human with any kind of sympathy or empathy can bear to watch another suffer. We have an instinct about us, we humans, to react to ease another's suffering and to end it when we can. But to end the person suffering?

Wouldn't, Mr. Nikonov, instead of jumping on the killing bandwagon, your time be better spent advocating for disability rights, better health care for people with disabilities and chronic illnesses, and better support systems for those with disabilities and their caregivers, as these things are of very poor quality in your country? Surely the suffering you deem of those with developmental disabilities would be greatly reduced. (Suffering both real and imagined, I might add, as many people with developmental disabilities do not necessarily see themselves as suffering anymore than anyone else.)

But, no, of course it wouldn't end. Human suffering will have no complete end until Christ returns, and oh, how we groan inwardly waiting for the redemption of our bodies waiting for that time. (Romans 8:23)

And, my how we suffer. We all suffer. People with and without disabilities suffer.

Oh, but what is our answer? Who shall free us from a lifetime of pain, from the entire human history of struggle, strife, and sorrow?

My friend, the answer is always Christ and His cross. It was there that this holy God-man, this One of whom no one suffered more, bore our sorrows and carried our griefs, this man, this God, took upon Himself our sin, absorbing the wrath of God that was upon us, this Jesus, this son of God who agonized in the garden over His Father's will to crush Him, suffered and died an atoning death for our sin.

We look at the Cross of Christ and we understand love: "This is love, not that we loved God, but that he loved us, and gave his son as atoning sacrifice for our sin." (1 John 4:10) We look to the Cross and we find our salvation, our forgiveness, our reconciliation with our Creator. We look to His suffering and know that by His stripes we are healed. The hope we have in Christ and His empty tomb give us more hope than we can ever comprehend.

In Christ we have love. In His death we have forgiveness of sin. In His resurrection, we have the promise of our resurrection from pain, suffering, and death into life and freedom from sin and struggle.

Finishing 1 John 4:10, 1 John 4:11 says, "Beloved if God so loved us, we ought to love one another." 1 John 4:19 says, "We love because he [God] first loved us."

We are not to do harm to those suffering. But because God loved us, because Christ became poor so that we could become rich, because Christ humbled Himself and made Himself a servant, because we who are His are new creations enabled by the Holy Spirit to do so, we are to care for those suffering! To grieve with those grieving and to rejoice with those rejoicing. To clothe the naked, feed the hungry, shelter the homeless, visit the sick, and to visit those in jail.

So, we respect human life. Nay, we revere it, for humans reflect the very image of our Creator. Because we revere human life, we strive to end the suffering of it we are able to end, to ease what we can ease. And we give the world our fellow human beings, our fellow sufferers, the hope of the Gospel- the forgiveness of sins in Jesus' name and the promise of a new life and an end to suffering at God's appointed time.

Meanwhile, "we know that for those who love God, all things work for good who have been called according to his purposes. For those God foreknew he also predestined to be conformed to the likeness of his son, that he might be the firstborn of many brothers. And those he predestined, he also called; those he called he also justified; those he justified he also glorified." (Romans 8:28-30) And we "consider that our present sufferings are not worth comparing with the glory that will be revealed in us." (Romans 8:18)

How Do People With Profound Cognitive Disabilities Get Saved?

A friend and I had a conversation about people with severe and profound cognitive disabilities, such as those in the latter stages of Alzheimer's, and their salvation. The question arose, how do those who do not understand, who cannot seek God, get saved?

I must answer, who can seek God? Romans 3:10-12, Psalm 14:1-3, and Psalm 53:1-3 says that no one seeks God and that no one understands (emphasis mine). If indeed, we are enemies of God (Romans 5:10), children of wrath by nature (Ephesians 2:3), and sinners at our very conception (Psalm 51:5) how could we seek God? Salvation, you see, is not about us seeking after God- but God seeking after us!

Jesus says that no one can come to Him unless the Father draws Him (John 6:44). Jesus says that those who are taught by the Father come to Him (John 6:45). We do not lean on our own understanding.

I worked with a man once, 'Kevin', who was born with a profound developmental disability. He had the lowest IQ of anyone I've ever known. He had no mobility, no bowel and bladder control, and received nutrients from a feeding tube; the man couldn't even eat. He responded with a smile to soft vocalizations spoken closely in his ear; whether or not he understood what was being said to him, I'll never know, though it was obvious he enjoyed that human interaction. But that smile is all he had to give to the caregivers around him who provided him his every need. This man was utterly helpless and completely dependent.

This is how we ALL are regarding our salvation. Utterly helpless and completely dependent on someone else to save us. We try and we strive under the Law of God to meet His demands and to prove ourselves righteous, but it is to no avail. We all fall short of the glory of God. We all sin. (Romans 3:23) And none can save ourselves.

Even for Kevin, though no outward sign of him sinning was ever seen by me, his heart is what God searches to judge his deeds, and his heart is deceitful and desperately sick. (Jeremiah 17:9-10)

But this is what God did for the hearts of Israel in Ezekiel 36:25-27- He gave them a new heart and a new spirit. He took their heart of stone and gave them a heart of flesh. He put His Spirit in them and caused them to walk in His statutes and obey His rules.

This is how God works. "While we were still helpless, at the right time Christ died for the ungodly... God demonstrated His own love toward us in that, while we were yet sinners, Christ died for us." (Romans 5:6, 8) Weak and helpless all of us, God saves us. "In this is love, not that we loved God but that He loved us and sent His son to be the propitiation for our sins." (1 John 4:10, emphasis mine)

This propitiation, Christ absorbing the wrath of God that was upon us, is what saves us. This is what our salvation is dependent upon. Not on us seeking God or understanding Him on with our own deceitful minds and sick hearts.

God calls us to repentance and faith in this work. By grace we're saved through faith (Ephesians 2:8). Faith- "the assurance of things hoped for, the conviction of things not seen" (Hebrews 11:1), being sure and convinced of the promises of God regarding the Cross and the Gospel, comes to us by hearing and hearing by the Word of Christ (Romans 10:17). It is given to us in a measure (Romans 12:3). His kindness leads us to repentance (Romans 2:4) which He grants (Acts 5:31, Acts 11:18, 2 Timothy 2:25).

For Kevin and for us, Christ is our Savior, our Seeker Who came to seek and save the lost (Luke 19:10). God has mercy on whom He wills and hardens whom He wills (Romans 9:18). Should He will, the God Who sent His Son to die for the sins of Kevin will have mercy on him, as He has me, and grant him faith, repentance, understanding, salvation, and a heart of flesh. That is how Kevin, a man with a profound cognitive disability will get saved.

Kevin may never be able to stand on a street corner and proclaim the Gospel. He may never in his earthly body be able to give words to his faith. But the fruits of Kevin's salvation would certainly be evident in ways that would point those around Him to His Savior. Maybe that's what his smile was all about... Speculation. Sorry.

Now, for those of us who are in Christ, including men, women, and children like Kevin, because we have been loved, pursued, given mercy, saved, and regenerated with new hearts, now we are free to seek God. Now we can understand Him. Because He loves us, we can now love Him.

Texas and Its Institutions

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'.

Pictured at right, Haseeb Chishty, the man severely beaten by his caregiver at Denton State School, with his mother

Problems with Some of Us Conservatives

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.

Natural Instinct

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.

Doctor Worries Abortions May Be Reduced

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.

Harming the Hidden

From Daily News Brooklyn

A shocking video shows a woman dying on the floor in the psych ward at Kings
County Hospital, while people around her, including a security guard, did
nothing to help.

After an hour, another mental patient finally got the
attention of the indifferent hospital workers, according to the tape, obtained
by the Daily News.

Worse still, the surveillance tape suggests hospital
staff may have falsified medical charts to cover the utter lack of treatment
provided Esmin Green before she died.

"Thank God for the videotape
because no one would have believed this could have happened," saidDonna
Lieberman, executive director of the New York Civil Liberties Union.

This is for real. This is what is happening in our hospitals and institutions for those with mental illnesses, developmental and other disabilities, and the elderly. This is not an isolated case.

This kind of mistreatment and abuse did not start with our generation or with the one before ours. It has been so since, I imagine, the beginning of the existence of such disabilites. Since the beginning of human weakness and false human strength.

I have lots of ideas about solutions, but I am no expert and really haven't the energy right now to cover them.

Some day I'll share my experience as a patient in various psych hospitals. The one thing I will say now, is that sometimes people in attempt to be sympathetic will show horror that I had to be in there with 'those' kinds of people, meaning of course my fellow patients. And I try as best as I can, without getting into much detail with them, to explain that the patients were not a source of fear or terror for me. It was the staff, well, to be fair some of the the staff, not all of them. More than them personally, though, it was the 'system'.

Years later, I became a 'staff' working in care facilities and group homes for those with developmental disabilities. Their stories and long term experiences in care facilities and institutions were mild compared to my short time spent in psych hospitals. The first facility I worked in was so bad and my experience in the psych hosptitals was still so fresh in my mind that I quit working there only a couple of weeks after I started and steered clear of that kind of work for many years. But I went back because something in my heart pulled me back there.

Thankfully, all of my other jobs, working with those with developmental disabilities have been in small care failities and group homes. Those places weren't perfect by far, believe me, they had their share of problems, but even a small care facility of three to sixteen beds makes all the difference in comparrison to large institutions and nursing home sized facilities.

While working for a six bed care facility, a nursing home sized facility in a town nearby us for men and women with developmental disabilities was shut down. After two deaths and untold amount of abuses.

Several of the former residents came to our facility with such emotional scars that my heart won't let me write anymore.

But here's an old news article about the facility: Choctaw Had Legacy of Abuse

This says much. From the above article, "The things that go on out there, while they are not excusable, they are somewhat tolerable because of the alternative," then-Deputy Health Commissioner Brent VanMeter said after the body of the resident who had been dead for six days was discovered. "What are you going to do with these people if you don't keep them there and hope that that facility is doing the best that it can?"

Here's a related news article: Care Center Bear History of Abuse

It's hard to blog through tears.

Court Denies Bid to Sterilize Woman

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, aNorthwestern 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.

What If Relationship?

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'.

Walgreens Embraces Employees With Disabilities

From CBN News

Walgreens Embraces Employees With Disabilities

Thoughts on Identity

I like the freedom I have found, which actually I've always had, to decide for myself how I want to be defined. I like choosing for myself with Whom and with what I will identify.

That's not to say that there is no Truth in who I am. The truth, the absolute truth, is I am created by God for relationship with God in the image and likeness of God.

I like the freedom to choose that Truth. I like the freedom to decide for myself to identify with Christ and allow Him to transform my identity.

I like that freedom verses being defined by others who and what I should be. Verses being defined by others by my abilities and disabilities. Verses being defined by my faults and gifts.

I read a post at Disabled Christianity this morning which talked about a woman who, when asked if she had a disability, replied, "I used to have Down syndrome." To her people with Down syndrome were treated differently and ostracized. However, at this point in her life she is a part of things. She's a part of her church. She sees herself as a "normal human adult", as she would say. Therefore, in her conclusion, she must not have Down syndrome anymore.

I suppose it would be good if she recognized that, yes, she does have Down syndrome and learn that there is no shame in that and that it doesn't make her 'different'. It would be just as good if the rest of us learned that, too- if the rest of us learned that men and women with Down syndrome are, indeed, "normal human adults".

But I think it's also very good that she is choosing her own identity and does not define herself by her disability. She has that right to decide for herself whether or not to identify with her Down syndrome. A "normal human adult' is a valid self-definition.

Synagogues Opening Minds and Doors

From the article, "Opening minds, and Congregation Doors, to the Disabled" by Audrey Dutton :

"We were really trying to find a vehicle that would be helpful in making positive changes in the community in the area of having congregations be more welcoming
and more inclusive,” said Lenore Layman, special needs and disability services
director at the partnership.

The partnership’s goal was to ‘‘create a culture of inclusiveness” for disabled people and their families — a culture that many synagogues are now adopting, according to Layman.

‘‘There’s been so much in the secular world” that regulates disabled access on a physical level, Layman said. Layman said the ‘‘culture” of inclusion — how to speak to someone who is disabled, include them and accommodate their needs — is
something all houses of worship should work to create.

Interested In Online Friendships?

From their website:

e-Buddies fulfills the mission of Best Buddies by facilitating e-mail friendships between children and adults with intellectual disabilities and their peers who do not have intellectual disabilities. Individuals are matched in e-mail friendships based on age, gender, geography, and similar interests. e-Buddies never matches individuals
that reside in the same state. We ask members to e-mail each other at least once
a week.

e-Buddies provides individuals with intellectual disabilities an
opportunity to develop new friendships while acquiring much needed computer
skills. The benefits of that are immeasurable.

I joined, and it's pretty fun and very easy. My new friend is easy to talk to, and she's got quite a lot to say herself.

Drugs Offer No Benefit in Curbing Aggression, Study Finds

From the New York Times

Drugs Offer No Benefit in Curbing Aggression, Study Finds

By Benedict Carey

Published: January 4, 2008

The drugs most widely used to manage aggressive outbursts in intellectually disabled people are no more effective than placebos for most patients and may be less so, researchers report.

The finding, being published Friday, sharply challenges standard medical practice in mental health clinics and nursing homes in the United States and around the
world."

the article continues:

In the study, Dr. Peter J. Tyrer, a professor of psychiatry at Imperial College London, led a research team who assigned 86 people from ages 18 to 65 to one of three groups: one that received Risperdal; one that received another antipsychotic, the generic form of Haldol; and one that was given a placebo pill. Caregivers tracked the participants’ behavior. Many people with very low I.Q.’s are quick to anger and lash out at others, bang their heads or fists into the wall in frustration, or singe the air with obscenities when annoyed.

After a month, people in all three groups had settled down, losing their temper less often and causing less damage when they did. Yet unexpectedly, those in the placebo group improved the most, significantly more so than those on medication.

In an interview, Dr. Tyrer said there was no reason to believe that any other antipsychotic drug used for aggression, like Zyprexa from Eli Lilly or Seroquel from AstraZeneca, would be more effective. Being in the study, with all the extra attention it brought, was itself what apparently made the difference, he said. “These people tend to get so little company normally,” Dr. Tyrer said. “They’re neglected, they tend to be pushed into the background, and this extra attention has a much bigger
effect on them that it would on a person of more normal intelligence level.”

In my experience as a direct care giver and medication aide working with men and women with developmental disabilities, administering antipsychotic medication for those who exhibited aggressive behavior was very much the norm. Behavioral management techniques were attempted, though sometimes more half-heartedly than others, depending on the agencies I worked for. However, in almost all individuals displaying aggression, medication was the preferred method of managing behaviors.

I very much agree with part Dr. Tyler's statement about the people in this study getting so little company normally, that they are neglected and tend to be pushed into the background, and the extra attention from being in this study has a big effect on them. (Though I don't, as he does, believe it necessarily has anything to do with their low intelligence. This kind of attention would have a big effect on anyone.)

I'm not surprised that those who received the placebo had better outcomes than those who received the real medication. Antipsychotic drugs are powerful. They make one's head cloudy and can alter a person's reasoning skills which makes other behavior management techniques such as verbal prompts and positive reinforcement very difficult.

I'm not discounting drugs for those who truly need them, and indeed there are people with developmental disabilities who also have various mental illnesses, including psychosis, who do benefit from these kinds of drugs. But giving someone in one's care uneccesary medical treatment is called abuse.

People First Language

People First Language is just what it sounds like- putting the person first in describing a person with disabilities. Examples would include saying:

• person with a disability vs. disabled person


• woman with a developmental disability, man with a cognitive disability vs. mentally retarded man/woman


• 'He has Down Syndrome vs. 'He is Downs'


• 'She has a learning disability' vs. 'She's learning disabled'


• woman with a mental illness, man who has Schizophrenia' vs. 'She's mentally ill, He's schizophrenic'


• man who uses a wheelchair vs. wheelchair-bound, confined to a wheelchair

Important to note: People First Language is not law. Some people with disabilities do not use this language, or at least some aspects of it.

I actually use People First Language for myself, even more than for those I don't want to offend. I am predisposed, you see, to see the weakness first in the people around me, and, therefore, I limit people in my own prejudices regarding disability, race, height, you name it. Using People First Language has helped me differentiate between the people around me and their weaknesses (and strengths).