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.

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

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.

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.

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).