33 posts tagged “developmental disability”
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.
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.
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.
...so what do you call them?... 'them' being people with disabilities.
I knew the subject would come up, as it kind of sort of did in a recent post of mine and in recent conversations with friends, as I began sharing about my interest, heart, and love for people with disabilities, especially people with developmental disabilities, here on Vox and with others. I was kind of avoiding the subject, though. It's hard for me to voice my opinion as, for one, I don't know all the answers here.
Let me just share my thoughts and at the same time, say that my opinion and my ideas are NOT the end all, be all to what society, especially Christians, should 'call them', 'them' being those with disabilities.
I grew up very confused about and searching for identity myself. Who am I? What am I? Not able to find others to identify with, I clung to whatever name anyone called me, whether in jest, whether in labeling, or, later, in whatever I was diagnosed as being. ('Being'- key word here.)
I was the funny one. I was the fat, lazy one. I was the quiet one. I was the depressed, obsessive/compulsive, mentally ill one. I was the different one.
As much as I was glad to feel I was somebody with an identity and that people saw me, for I think labels for me meant I was seen, the labels were painful. I knew all of those labels fit me somehow, but I knew they weren't all of who I was. I knew I had gifts and talents in me somewhere amid all the negative labels, but I knew those weren't all of me, either.
All the labels were limiting. During my stint as the 'funny one', for instance, I wanted to have serious days, especially as I was becoming seriously depressed. Now, during my days as the 'quiet one', I want to speak more than I do, but I find it difficult to break free from the 'quiet one' label.
I began working with people with developmental disabilities in direct care, and was quick to memorize their diagnosis', such as IQ, 'mental age' (gag, I hate that term), and their sometimes accompanying mental illness listed not so subtly in their charts. That's how I began to identify 'them'. I labeled them as their diagnosis. "Oh, yeah, that's Fran (not her real name)", I'd say to new staff. "She's Down's, self-abusive, obsessive-compulsive, sometimes aggressive, MR (short for mental retardation), and she's 45 years old but has the mind of a two-year old."
YIKES! That hurts just remembering how quick I was and still am to label others. It really hurts.
Oh, I loved Fran. I became devoted to Fran and to the others I worked with. But I had a hard time seeing them past their diagnosis'.
Over time, a lot of time, as our relationship grew, it became more and more clear to me that Fran really was much more than a 'Down's MR'. She had real character and her own, unique personality. She related to me as a real person. Her 'issues' became more understandable to me, after I learned from where they stemmed, and I realized that they were actually quite relatable. I had many of her same issues.
Mainly, I learned the hard, painful way, and am still learning the hard, painful way that whatever we decide to 'call them' does not determine their identity or who they really are. Labels are convenient for quick judgements.
I learned that for both Fran and me, finding our identities outside of our labels- it's such freedom. I don't know how Fran has decided to ultimately identify herself. I haven't seen her if a few years, now. But I've chosen the Jesus route for myself. I have chosen to let him define me- after all, He created me. He would know who and what I am.
In whatever I 'call them', I try to avoid labeling or limiting those with disabilities. Really, often when talking about my friends or others I know with disabilities, mentioning his or her disability is not even pertinent to the conversation. When their disability does pertain, I use People First Language. (Please consider taking the time to check out this link.)
People First Language is just what it sounds like- putting people first. Instead of identifying a person as his or her disability, it simply suggests that they deal with something. (Who doesn't, though, right?)
Examples of People First Language include saying:
- person with a disability [instead of disabled person, handicapped]
- woman with a developmental disability, man with a cognitive disability [instead of mentally retarded]
- boy who has Down's Syndrom [instead of boy who is Down's]
- girl who has a learning disability [instead of learning disabled]
- woman with a mental illness, man who has Schizophrenia [instead of mentally ill, schizophrenic]
- child with Autism [instead of autistic]
- man who uses a wheelchair [instead of wheelchair-bound, confined to a wheelchair]
Important to note: Many people with disabilities do not wish to use this language. Many people with disabilities, as does my Vox neighbor Dirty Penguin, choose to accept their disability as a part of themselves and believe that one cannot nor should not be seen as separate from their disabilities. I haven't asked him, but many like Dirty Penguin may actually find some aspects of People First Language offensive.
I once took this viewpoint in regard to my depression and OCD. I believed my illness to be a part of who I was (verses what I believe now, that depression and OCD are something I have through which God creates character and calls out the real me.) So, while I very respectively disagree with this viewpoint, I understand it.
I would encourage the use of People First Language for general audiences. But because others may be offended by it, just know your audience.
I use People First Language really more for myself than for fear of offending others. It keeps me in the mindset of not labeling or limiting others.
I hope this makes some kind of sense. I feel out of practice in the blogging world. I can always edit, though.
I attended a worship thingy the other night and have something burning on my mind... well, it was burning, now it's just kind of warm.
It has to do with the worship leader, one of my favorites, by the way, of the worship 'thingy' using the term 'mental capacity of a two year old' in describing a man with developmental disabilities. He has no idea how offensive this term is, I'm sure, or he never would have used it. I'm sure everyone who uses the (sadly) common phrase as 'mental capacity' has no idea how limiting that term is or how it hurts the feelings of those with developmental disabilities who hear the label.
Terms such as 'mental capacity' and 'mental age' are diagnostic terms used to connote similarities in the stages of the developmental process when clinically measuring a person's IQ. They are becoming antiquated, as they aren't really accurate in describing a person's abilities, disabilities, or IQ. And when used by lay people such as we, who are using the only diagnostic tool of observation, the terms are used to make quick judgements and labels.
Bottom line- would you feel comfortable going up to a person with a developmental disability, watching her/him for awhile, noticing how s/he behaves, how well s/he does a task, or what-have-you and then approaching the person with the assertion of, "You have the mental capacity of a toddler"? Would you not think that's a little bit rude? So, if you wouldn't say it to a person's face, then why do it behind his/her back, or in the case of this worship leader, on stage in front of a hundred people with the assumption that there is no one in the audience with a developmental disability or one's family member sitting there who would find that offensive?
I guess what really bothers me is that this worship leader is always giving his testimony of the change and growth he has had in his own life and the change and growing that continues. However, to label someone else's capacity so presumptuously as to claim he met all of his capacity at age two... come on. That's not fair.
Granted this man's IQ may never change and there are things he may never be capable of, without a direct miracle from God. But this man's total capacity cannot be judged so quickly as to say it's filled, it's stuck at age two, that's all she wrote. That phrase, 'mental capacity of a two year old', says to me, the man with the disabilities will never grow any more, learn any new things, change in character, or develop in his relationships with his family, friends, and God. For the phrase denies the man all those possibilities.
Okay, I'll let it go. I can forgive this worship leader and let him know by letter or something how the way that he used that phrase hurt my heart. Hopefully, I can be more eloquent that I have been here. It's late, and I'm not feeling very wordy or explanatory.
'Night.
