35 posts tagged “developmental disabilities”
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!
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.
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.
I am SO glad this is being addressed.
Drugs Offer No Benefit in Curbing Aggression, Study Finds
By Benedict Carey
Published: January 4, 2008The 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.
