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John, thanks for your comments. To me there is a vast difference between ceasing to prolong life by removing life support and actively snuffing out a life using poison or some other means. My understanding is that palliative care is so much better nowadays that nearly all people can face death without fear of painful suffering. A couple years ago, I wrote a reflection on the death of Dr. Jack Kevorkian. In response, Rev. George Vander Weit articulated some of the same arguments you make, and he made some additional points as well.
Elly, yes! Same with my mom whose journey with dementia lasted about 12 years. Though difficult in some ways, we still had a lot of good times together during those years, and mom shared her love with others in her own way nearly to the end of her life! What a loss if some doctor had decided that she did not have sufficient quality of life and euthanized her.
Amen and Amen! If assisted suicide and euthanasia had been legalized 30 years ago, there would probably be no need for nursing homes, and I wouldn't have had the opportunity or privilege to spend 231/2 years of my nursing career doing the best job I ever had - helping seniors with various disabilities to have the best quality of life possible within the circumstances that they found themselves in and until their life on earth ended. Even from their wheelchair or bed in a nursing home, these folks have much to teach us and share with us. This is aside from the fact that assisted suicide and euthanasia go against the commandment to not kill. We all need to speak out against this evil!
Horray Oma! I am so glad your wonderful story made it to the world wide web. I hope others can identify with this message and use the tips you gave. Much love from me in Toronto!
Thanks so much for sharing this Affina. Like so many difficulties and challenges, it is easy for those of us who are hearing impaired to feel different, frustrated, resentful, and alone with our particular challenge. Educating and informing others about our challenge so that they can better understand and help is very important. However, even with those closest to us, this seems like something that has to occur on a frequent basis. I have to remember that I live in a world, community, and family where most people are not significantly hearing impaired. It also helps me when I am able to laugh at myself . . . like when I misunderstand something and make a comment that has no relationship to what was said.
I do hope that the Christian community in particular would have a better understanding of the little things that they can do to communicate more effectively with the hard of hearing and hearing impaired individuals around them.
Again, thanks for sharing your thoughts and experience.
Grace & Peace,
I have several family members with hearing loss. These tips are very helpful. Thanks!
Randy, thanks so much for your thought-full answer. I appreciate your the qualifications you make to give Kung the benefit of the doubt. In case someone doesn't click "more" I want to quote one of your sentences in full, "I hope for his sake, and perhaps for the sake of those who admired his culturally respectable, but scripturally inadequate and, it seems, spiritually comfortless theological work, that he comes to a deeper, more authentically biblical, more genuinely spiritual view of the matter, and also that he comes to see how harmful and dismissive his statements are for those who don’t have perfect minds and bodies." Yes, especially so because no human has a perfect mind or body!
Thank you for that fascinating reflection, Mark. As a (part-time) academic theologian and full-time pastor, I can personally imagine some of what Küng fears, how he laments his decline, and how he will grieve his loss. On the other hand, I would expect one of the most famous (sometimes infamous) theologians of the twentieth century to understand that lament and grief are part of living in a world groaning for its redemption, and that suffering can at least potentially be or become redemptive; not least of all in the Suffering Servant himself, but also how our suffering can in some mysterious way participate in Christ’s sufferings. I think of the very difficult-to-interpret saying of Paul, Colossians 1:24: “Now I rejoice in what I am suffering for you, and I fill up in my flesh what is still lacking in regard to Christ’s afflictions, for the sake of his body, which is the church.” Not that there is something lacking in the value of Christ’s suffering, but that we also take up our cross, die with Christ, and also experience fleeting moments of resurrection and new life. The NLT might be on the right track when it renders this verse “I am glad when I suffer for you in my body, for I am participating in the sufferings of Christ that continue for his body, the church.” Suffering is a profound mystery, one that apparently eludes this theologian (presuming his views are rightly represented, and presuming that his utterances are deliberate reflections and not just cries of desperation.) Being united with Christ also means that our suffering, perhaps even what we think of as “natural” suffering, can at least potentially take on a meaning and significance that cannot be found in a naturalistic worldview, one with which Küng found himself far too comfortable. The utterly secular, vacuously utilitarian view of suffering that Küng appears to buy into is astounding and disappointing. It is not, however, terribly surprising to those familiar with his rationalistic theological method, which exegetes culture more than listening to Scripture, and seeks to defensively justify Christian faith to a secular world, when the Christian faith rather stands as a prophetic critique of secular, materialistic, utilitarian—in a word, hopeless naturalism. When I was in seminary I read his 800 page book Does God Exist? and at the end I still had no idea what Küng’s answer was. I hope for his sake, and perhaps for the sake of those who admired his culturally respectable, but scripturally inadequate and, it seems, spiritually comfortless theological work, that he comes to a deeper, more authentically biblical, more genuinely spiritual view of the matter, and also that he comes to see how harmful and dismissive his statements are for those who don’t have perfect minds and bodies. And perhaps this is not Hans Küng at his best, but in his weakness, and perhaps were he in a better state of mind and spirit he would not say such things.
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Steve, you hit the nail on the head. Too often in society and the church people with disabilities are treated as problems to be fixed rather than the works of art whom God has created every single one of us to be.
Mark, thank you for this post. As I mentioned in my email to you, your post comes at a very good time because we are currently in the middle of a series in our small groups on bioethics. Since I proposed this series, I was asked to lead it and since I am not an expert in this very difficult subject I have been doing a lot of studying over the past couple of months to prepare. One of the first things I discovered is that bioethics does not presume to follow our Christian beliefs. There is a wide range of beliefs on what is ethically acceptable in the field of medicine. So, in response to your last paragraph, while having the ability to change our own chromosomes may have positive implications, where do we draw the line? When I think of the passage in Psalm 139:13
For you created my inmost being; you knit me together in my mother’s womb
I can't help but picture in my mind God as an artist, intimately involved in creating each one of us in His image. If we see a painting or sculpture and we can't understand why the artist created it the way he did, do we have the right to go up to the piece of art and "fix" it so it makes more sense. We don't understand why God allows people to be born with disabilities, but does that mean we have the right to "fix" them? We need to help them have a better quality of life, but how far do we go? I should be honest here and mention that both my girls were born healthy, without disabilities, so I have not experienced the pain and questioning that parents of children with disabilites go through. The theme of our study last Sunday was Value. How does the Bible describe our value compared to our society's description? Often society tends to say that if a person is not able to contribute to society in a productive way, then that person is worthless. But we are told in 1 Corinthians 12:18-26 18 But in fact God has placed the parts in the body, every one of them, just as he wanted them to be. 19 If they were all one part, where would the body be? 20 As it is, there are many parts, but one body. 21 The eye cannot say to the hand, “I don’t need you!” And the head cannot say to the feet, “I don’t need you!” 22 On the contrary, those parts of the body that seem to be weaker are indispensable, 23 and the parts that we think are less honorable we treat with special honor. And the parts that are unpresentable are treated with special modesty, 24 while our presentable parts need no special treatment. But God has put the body together, giving greater honor to the parts that lacked it, 25 so that there should be no division in the body, but that its parts should have equal concern for each other. 26 If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it.
During our small group discussions I was reminded that everything is not always as black and white as I might think. We need to be open to discussion and to be ready to listen and respond in Christian love.
If anyone is interested in studying bioethics from a Christian perspective I would like to recommend the following:
1. How To Be A Christian In A Brave New World by Joni Eareckson Tada and Nigel M. De S. Cameron
2. http://cbhd.org/ Center for Bioethics and Human Dignity - offers papers and commentaries on various issues written by Christians in the field of bioethics. Many have been transcribed into audio podcasts
Still, genetic manipulation has the potential for so much good too as this NY Times article illustrates. Lord, give us wisdom!
Willie, I fear that your "chilling" examples from the Hitler and Stalin eras remain alive today, though in more subtle forms. From abortions performed for various reasons (such as genetic anomalies and gender selection) to continued experiments on human cloning, we are entering a new frontier in humankind's attempt to create a master race. The voice of Christians (and people of other faiths) who can speak articulately about the sanctity of each human life will be critical.
I agree that with advancements in medical research we become both hopeful and worried.
With infertility treatment, many couples can now have a family and raise children. Many diseases can be diagnosed and treated.
However, these advancements are not purely clinical procedures that result in disease-free outcomes. We also move into the realm of ethics and moral decisions – that ultimately has to be accountable before the LORD.
Originally the world was created “very good” (Gen 1:31). Because of Adam and Eve’s disobedience, God cursed the world – bringing death and decay into it (Gen 3:17, Rom 5:12, Rom 8:22). Adam and Eve did not carry accumulated genetic mistakes. As genes passed from generation to generation, the imperfect copying process in a sin-cursed world resulted in errors, illness and disabilities.
There are several examples of how mankind attempted to eradicate these errors. One of the most chilling examples was Hitler’s Lebensborn / Fountain of Life programme in 1935-1945 where he attempted to create a super-race of Nazi-elite. Some of the survivors of the programme met in 2006 – confronting their past lives of horror, shame and abuse.
In 1926, Stalin gave orders to create “super warriors” – “an invincible human being, insensitive to pain, resistant and indifferent about the quality of food they eat”. Ilya Ivanovich Ivanov (his leading scientist) failed dismally in his experimentation in West-Africa.
A married couple approached an infertility clinic. The husband was not able to have biological children of his own. The wife was able to conceive and have children. They wanted the wife to be inseminated with her father-in-law’s sperm to preserve the family-genes. The clinic refused on moral grounds. However, a private medical team carried out the procedure later.
In the USA in 2012 a surrogate mother refused to abort a baby with congenital defects despite tremendous pressure form the biological parents and their lawyers. The little girl was later adopted by another family.
Our daughter, Ingrid, was born in 2005 with a rare chromosome translocation. According to medical reports at the time, this should not have had an impact on her abilities or development as it was “complete”. After her birth, we were confronted with a radically different picture: agenesis of the corpus callosum, West syndrome, catastrophic epilepsy, profoundly disabled, cortically blind … and the list went on.
I am not blaming medical science here – because we soon realised that medicine is more of an art than an exact science. And that some decisions are based on human judgment – that leaves room for errors. We also learnt that some illnesses cannot be conquered and that we had to undertake a journey in faith with an exceptional child.
I know now that my child does not need to have blue eyes, blond hair, with three gold Olympic medals around her neck receiving a degree in rocket science for me to be judged as a good father. I work 12-hour shifts – I remember Ingrid staying awake until 20h00 during my day-shifts (despite my wife’s best attempts to put her to sleep). When I got home, I picked her up, she would give a soft sigh, snuggle against my chest and fall asleep. In her way, I knew she said: “I love you daddy and I feel safe with you”.
Medical and biological research can become a minefield if we do not take moral and ethical issues into consideration. Mankind once believed that “ … you will be like God …” (Gen 3:5) – and we failed because we do not have the nature nor the knowledge to deal with it.
This leaves us with the final realisation that what we know is limited, that we will be held accountable and that all glory belongs to the LORD.
Psalm 139: 13-14 “For You formed my inward parts: You covered my mother’s womb. I will praise You, for I am fearfully and wonderfully made; marvellous are Your works, and that my soul knows very well”.
Soli Deo Gloria,
Thank you, Mark, for sharing these words. There are still so many topics we have a hard time discussing in our church families, including disability, divorce, abuse, addiction and mental illness, among others. Silence only leads to isolation and shame. It cuts people off from the church and from God. While it is important to respect people's privacy and not to pry, we do need to be able to listen and support each other through all of life's challenges.
A short article in Creation Magazine, 35(4)2013 (from Creation Ministries International), caught my interest. A UK politician compared disabled children to deformed lambs with five legs or two heads that need to be put down.
One is reminded of Hitler’s rants against humans he called “useless eaters”. Examples in history of attempts to create a society that is disability free are numerous – in Sparta a father had the legal right to terminate a weak child; in Rome the handicapped were raised in the dark.
Christianity introduced the idea that children like these were close to God (Luke 9:48 “…For he who is least among you all will be great.”)
But, somehow the desire to conquer sickness and imperfection is deeply embedded in human nature. When confronted with that which does not fit into our pictures and plans, we become uneasy. And try to make our own plans.
In Isaiah 45, God’s plan for the salvation of Israel and the world, is revealed. Verse 9-10 (from the Jewish Study Bible), reads: “Shame on him who argues with his Maker, though naught but a potsherd of earth! Shall the clay say to the potter, “What are you doing? Your work has no handles”? Shame on him who asks his father, “What are you begetting?” Or a woman, “What are you bearing?””
What seems of no importance and little value to the world, is a precious pearl of great price to the LORD.
The link to the original article:
God bless, Anje
It seems to be a habit for many people like myself to talk louder when one's message doesn't seem to be understood. Long time ago I had to talk with a stranger who was in a wheel chair and had MS or maybe something worse. After a short time he said, "Just because I am disabled it doesn't mean that I am stupid." This was an imprtant lesson for me. This concept needs to be applied to all "disability" legislation and regualtons. "Hard cases make bad laws."
Thank you Bonnie and Mark. As an Expreesive Artist I have gained much insight from collaging images. I would encourage non-disabled adults to participate in childlike activities so that they can experience the freedom and wonder of God.
I envy those with childlike eyes their ability to simply experience the wonders of God. And not get entangled in appearances.
Geri, great to read about all that's happening. You'll enjoy Ralph and Carol. Such heart and knowledge! And Ralph is a fine, fine story teller. I praise God for you, your committee, and the work your church is doing! In the end, it's not just about accommodating and engaging people with disabilities, it's about being the body of Christ that God intended your church to be.
Thanks Bonnie. You provide another good reason why it would be good for adults with intellectual disabilities to be with the adults without disabilities in Sunday school classes and other activities. My experience with adults who have intellectual disabilities is that many of them are much less limited by adult conventions than we who call ourselves nondisabled.
This may be a bit off-topic - I agree with what has been expressed in this article. However, there is another side to it. When I think of "age appropriate" activities, sometimes I think that adults limit themselves by definitions of what adult appropriate activities are. I've had the wonderful privilege of leading support groups, and various small groups over the years. Much insight has been gained by spending time coloring with crayons, playing with play dough, clipping from magazines to make a self-portrait collage, or doing things like "describe your relationship with the Lord using chenille stems" (AKA pipe cleaners). Recently I observed my 6 mos. old granddaughter grabbing and playing with the table cloth at the restaurant where we were eating (threatening to severely disrupt our table) and then she leaned over to take a taste of it, chomping down on the side of the table (everything goes in her mouth for a taste). We all laughed at her antics. But I thought how little adults explore their world through their God-given sense of taste - maybe that's a good thing. But maybe it's not such a good thing that we, as adults, limit ourselves in how we explore our world, and our faith to socially accepted adult activities. Perhaps we have lost some of the childlike wonder and curiosity about our world that comes from exploration using all of our senses. Perhaps we all need to take more time to stop and smell the roses, or to sit down and color with crayons for awhile.
Well, as you see, it's been over a month since you left your inquiry, and first I'll say "THANK YOU!" for caring enough to check up on me and keep us motivated to do this work. We have been busy! :)
The committee continues to meet, and we have accomplished some things, and are working on more things. We've accomplished the adoption of a Disability awareness policy in the church, getting it recognized in council. It has yet to be more publicly announced and noticed in the weekly/daily communications of the church, but each member of the committee is working to do so in their own volunteering and tasks as members of the church, as well as in our regular meetings.
Right now we are in the middle of a series of sermons based on the Sacredness of Life. We've focused on Life, Hunger, this week is Human Trafficking, then we'll have Restorative Justice and then the last week is Disabilities Awareness. We have Ralph and Carol Hondered coming for a luncheon and presentation of the Blessings of Inclusion on the 29th of September. Our Friendship Group is invited to this as well, and we hope to have other churches represented that day as well. Invites are going out this week.
Someone from our committee will join me and the Building and Grounds Committee at their next meeting for a discussion of better inclusion and access for those with phyically disabilities. We have a good start, but could do better for welcome with automatic doors and spaces within the santuary that make their inclusion more welcoming.
We have dreams about being more available to the families who have a child or children with autism. We feel like we should be ready before we have the need. We've dreamed about offering a VBS to the community for those families, but haven't had the opportunity to share that with our church membership to see what kind of support we would have.
We have other people inquiring (Larry Van Essen, Christine Hager, our classis Disability Concerns Advocate, a college student from Australia, a possible visit from Barbara Newman of CLC Network for an inservice with our local Christian School teachers) and we seem to be becoming the 'hot-spot' in Northern California.
We're awed and humbled by the inquiries and pray for the strength and vision to carry out these tasks. Please pray for our team and ask God to equip us and protect us for the obstacles that will no doubt rise in front of us as we prepare to share God's love to all his children.
Blessings and grace,Geri
Bill, I disagree. You mention physical ability and mental capacity as ways to define adult, but in Canada and the US we define "adult" by chronological age. When someone reaches 18 or 21 (depending on what responsibilities are granted) we call them "adults." To put a 10-year-old in the nursery, or a 12-year-old in a Sunday School class for 3rd graders does these individuals a great disservice. Likewise, baby-talking to people who are in their 40's. We need to treat people who are of age as adults. Sure if an adult has intellectual disability, we do Bible Study on a level that he or she understands, but surely not have him sit in a Sunday School class with little kids.
Every time I see "Speclal Olympics" I think "Special Spelling Bee." It is mental capacity that defines "adult," not physical ability. if physical ability defines "adult" then, using the same logic, the age of consent should also be defined in terms of plysical ability and not chronological age.
Reminds me of a Seattle metro government (Bellevue?) which shut down a strip club because there was no wheelchair ramp to the runway. Never know when a crippled woman might wish to become a stripper.
Having worked as a trainer, casemanager, and job placement staff in a sheltered workshop (I prefer the term, "vocational training center") for much of my career, I can fully understand the challenges you and most programs of this type face. I am not familiar with Brampton, or the surrounding area, but I assume there are businesses that could be tapped for potential work for the folks in the training facility. It takes commitment, and a willingness to be flexible, and to think outside the box in order to build partnerships with local employers. The board and the staff all should be seeing this as part of thier job there. At the workshop I was at, we had a dedicated team that was out making contacts in the community and maintaining those relationship while building new ones. Getting involved with the local chambers of commerce was helpful. We also tapped into some set-aside work contracts that the U.S. gov't. makes available to vocational training centers to help bring work in-house. In several cases, we were able to have small, supervised crews of folks go out to an employer's facility to perform specific work projects. Some of these lasted for months, while some were shorter in duration. But it was quite useful because it gave our workers a chance to work outside the workshop while obsering how other people work in the community. I don't know if the Canadian gov't. provides work projects for workshops, but that would be something to check into. I wish you good luck!
Hi Diane, yes, you name some good criteria for responsible sheltered workshops: meaningful work and financial feasibility. I would add a third criterion: justice. I suspect that many people are opposed to all sheltered workshops because some workshops have engaged in exploitation and even abuse of those employed. But I agree that to throw them out completely would be a great injustice as well, because it would leave many people with disabilities with nothing to do for a day time activity, versus a meaningful and just sheltered workshop that gives people who could not work in the marketplace an opportunity to fulfill their God-given responsibility and desire to work.
I am not sure if we can continue this discussion a bit further. I just came across the posts, and found them very timely. I serve on a board in Ontario called "Community Living." We operate a sheltered workshop, plus we support individuals who are able to work in the regular workforce. In Ontario most sheltered workshops have closed, but a new one has just opened up again in the city of Brampton. There has to be room for sheltered workshops in our society, because regular places of employment are just not able to make all the accommodation. However, the difficulty is still how to employ the folks meaningfully in a sheltered workshop. We are experiencing lots of challenges in our workshop to make them financially feasible. Diane.
This is interesting in that it shows the continuum of disability. When I lived in Quebec my ability to speak French was a disability. However, I could (and did) move back to English Canada where I could function more easily. Dan doesn't have that option. I think his point about other people judging his "accent' ir right on. How often do we judge other people (especially immigrants) by their accent. We are trained to judge people quickly (first impressions) and that is the problem. Better to be trained to reserve judgment, listen and love as a spiritual discipline.
Thanks for this post.
Great blog post, Mark (from one who also was in the roomful of people captivated by Dan's presentation on disability attitudes a couple weeks ago).
I've heard various iterations of Dan's development of this topic in the past few years, all of which have been good, but the presentation at this summer's CRC/RCA Disability Leadership Conference was exceptional. It was so helpful and so on-target — not to mention so polished, so foundational to our work of advocacy, and so enjoyable to listen to. (BTW, in the 50 or so evaluations, it received the highest marks of anything that happend during the day and a half conference!)
I concur with Dan's discomfort about exercising care not to diminish the reality of a disability. Comparing a speech impairment/impediment to a Dutch brogue is helpful to a degree, but like all such comparisons it has a way of trivializing the realities and stigma of living with a disability.
Personally, I think I get what people want to convey when they say "everyone has a disability," but I also cringe. I've lived with an obvious physical disability since birth. I also speak in a monotone that may put some people to sleep, but I would not go so far as to compare that to Dan's speech impediment or even to Maas's Dutch brogue. It's just not the same.
Dan made two points in his presentation that I found particularly helpful in getting at this distinction:
• "Disability is not a blessing, but it is also not a curse,"
• "We are all disabled, but we are not all disabled."
Hair-splitter that I am, those distinctions resonate with me, even when I struggle to articulate them.
Nick, thanks. Great idea to make your own hypo-allergenic communion bread. Recipe is here, for anyone interested.
further discussion: http://network.crcna.org/forums/worship/qa-what-are-churches-doing-address-gluten-intolerance-when-serving-bread-lords-supper
Yes, I'm sure you do miss her, as do all of us who knew her well. It's been 5 months since her death, and I can still hardly believe that she won't pop in my office door some Monday morning, as she often did, to chat.
Thank you for writing this. Nella was my husband's aunt and our friend. We miss her so much.
Yes Mark, I didn't think about your readers in Canada or other countries where the laws and issues for the disabled are different than in the USA. It would be a major undertaking just to begin a larger discussion in this country, much less to bring those outside the USA into it. I guess your blog here is a small start, eh? I hope more readers will weigh-in on this.
John, a great suggestion for a major conversation. This gets even more complex as we consider that many of the Network readers are Canadian (including Caroline, whom I know). There is no federal disability law in Canada comparable to the Americans with Disabilities Act, though there is a federal health care system. Each province has its own set of laws pertaining to accessibility of built environment, work, etc. Whew!
This would be a many faceted discussion. If it were possible, a number of groups and interested parties should be invited. My initial choices would include: persons with a disablity, disability advocates, vocational rehabilitation counselors, community mental health professionals, employers, employment specialists, and local, state and federal legislators. I would also consider including advocasy groups like Nat'l. Alliance for the mentally Ill (NAMI) , Centers for Independent Living, Brain Injury Association (BIA), and groups that support and advocate for other disabilities. I would include churches on the list, depending on their willingness to participate. Quite a list, and I'm sure there are more. The enactment of the ADA, and new rules under the EEOC have improved the outlook for employment for many persons with disabilities, but those mentioned by Ms. Short are the ones who fall through the cracks of the laws. The other consideration to take into account is how employers have changed their job descriptions and hiring practices since the economy took a downward turn, and how they are reacting to the new health care law. Not to get too political about that, but I am seeing many private and government employers taking steps to downsize their full-time positions to part-time, or taking other steps to avoid what they perceive as the higher costs of proving health care under the new laws. I believe this will have an impact on persons with disabilities who are or will be seeking work. Hope this isn't getting the conversation off track.
Caroline asks a really good question, so I'll repeat it: "Can we imagine creative ways to provide meaningful work to people with developmental disabilities who desire to be integrated and yet will need on-going support?" Ideas anyone?
Mark, thank you for your blog entry. I appreciate your comments and can agree with you that we should not close sheltered workshops. I have worked with adults with developmental disabilities for a number of years in both residental and vocational areas. I see a gap between employment and the sheltered workplaces. Employment options work well for individuals who can gain skills and eventually work independently, while sheltered workplaces or day programs work well for individuals who have limited skills or who need more support. What about individuals who deeply desire to have meaningful work and engage with society (beyond recreational opportunities offered by sheltered day programs) but who will always need a level of support (making employment not an option). Can we imagine creative ways to provide meaningful work to people with developmental disabilities who desire to be integrated and yet will need on-going support? I hope and pray that we can.
More resources on the CRPD:
· (Web Page): The Disabilities Treaty: Opening the World to Americans with Disabilities
· (Video) The Disabilities Treaty: It's Time For Action (State.gov Link with Full Text & Closed Captioning) (YouTube) Secretary Kerry (Aug. 9): "The Disabilities Treaty is an international agreement that will help protect the rights of Americans with disabilities when they live, work, travel, or study overseas."
· (One-Pager): (Downloadable PDF – glossy! 508 compliant!)
· (Social Media) Follow the Special Advisor on Twitter: @IntDisability and on Facebook: https://www.facebook.com/SAHeumann.
As you are aware, the movement towards greater independence for persons with disabilities has been gathering steam since the "90's/2000's. Starting with independent or semi-independent housing, community awareness and accessability, it has now moved into the realm of employment rights and accessability. While I am very much in favor of improving the quality of life for persons with disabilities in these ways, my knowledge and experience have kept me from taking an over-zealous stand against community supports, like vocational workshops, and adult foster care, etc. My position is simply that, for each individual with a severe or chronic disability, there should be choices that they and/or their family or guardian can review and determine what will work best for them. This is how most people live their lives, so to have choices taken away is to not be allowed to live in the world as the rest of us do. Several years ago, the Ottawa Co. CMH, where I live here in Michigan, tried to withdraw most of their support funding for the local vocational workshop, in favor of folks being involved with unpaid, community awareness programs. In-home services were to be another option. Effectively, the CMH was deciding to no longer offer the option for some folks to go to their jobs, earn a paycheck, and learn new work and social skills. Parents of the people at the workshp gathered as a group, and spoke out against this idea, and eventually, the CMH board gave up on the idea. Grassroots efforts such as this have taken place in several other counties in Michigan that I am aware of, although I have not followed up to know whether they were successful in protecting their vocational workshop programs. This issue of course, has much to do with dwindling state and federal funds for maintaining such programs, but advocates for change have jumped on the bandwagon as well.
I hope our conversation here will generate more interest and comments from others on either side of this issue.
John, thanks for your comment. With your level of experience and your history of strong advocacy for employment of people with disabilities, your opinion holds a lot of weight with me. I just don't understand people who claim to be disability advocates and as part of their so-called advocacy seek to TAKE AWAY choices that some people who have disabilities want.
I am in full agreement with your 3 points and aguement for keeping vocational workshop programs for people who have more significant barriers that would most likely keep them from ever finding regualr, meaningful employment. Having worked for many years in the rehabilitation field, including 28 years as a case manager and employment specialist in a local vocational workshop, I can fully appreciate the opportunities that this type of work place offers to those who can thrive in a supportive environment that allows them to learn skills, earn a little money, and reach their potential, whatever level that may be. I recently debated the issue in a meeting of State rehabilitation counselors and other professionals, so I know that it is an issue that is and will confront communities around the country. Those of us who see our selves as strong advocates for persons with disabilities, or who live with a disability need to be aware of this issue and be prepared to speak to it from our experience and from our hearts.
Hi, Geri. It's been almost 4 months since you shared about your short-term committee. First of all, how is it going? I hope you've received a positive response from your various committees as well as the rest of your congregation. Sometimes when you are trying something new, people feel nervous and are slow to change. Secondly, we have recently started a Disability Awareness Team with the blessing of our Council. Our purpose is to promote disability awareness through training and encouraging our ministry leaders to be ready to welcome children and adults with disabilities. One of our first goals was to be prepared to have children with disabilites feel welcome at our VBS. To do this we invited a speaker who has had a lot of experience working with children in the local parks department as well as Special Olympics to speak to the VBS staff on ways to be welcoming. He did a great job. I actually had a teacher come up to me during VBS and share that, because of the training, she was able to encourage a young boy with autism who was having a difficult time. I thnk the important thing is to keep reminding your congregation of the importance of disability awareness. Write newsletter articles, sponsor speakers, bring books into the library. I am getting ready to lead a series in our small group on bio-medical ethics which has a lot to do with how we as a society view people with disabilities. I hope your committee becomes a permament part of your church and not just "short-term."
Here are specific ideas from the Unites States International Council on Disabilities to advocate for the CRPD:
1. Write to your local papers!
Check out these recent Op-Ed's that support of the CRPD. Share your own voice-- we are happy to support you in this process!
2. Call your Senators to let them know that you support the CRPD!
3. Visit your local Senate offices! Get a group together and go let them know about the ADA Anniversary and your support of the CRPD!
4. TWEET in support of the Disability Treaty! #ISUPPORTCRPD
For more info about CRPD visit www.disabilitytreaty.org
Yes, the ugly laws are an example of institutionalizing oppression through unjust laws that allow the majority to force the minority to "get out of the way." One scholar wrote a whole book about them. According to Wikipedia, they were not repealed until the 1960's and 1970's!
That would be really great if the Smithsonian exhibit would travel.
Wow, I have never heard of "ugly laws"--how shocking. This is an important exhibit, I wonder if it will travel?
Anje and Mark,
Thanks for referencing and sharing to the "Welcome to Holland" story. I feel I have gained some insight.
Anje, thanks for your insightful comments. In case a reader doesn't understand your reference to Holland and Italy, it comes from a story by Emily Perl Kingsley called Welcome to Holland. It's a wonderful story, but I can't agree with you more, Anje, that the story describes only the experiences of some people affected by disabilities, but surely not all.
I had a sense that I had been to this place you describe. The experience is similar for the disabled themselves.
Thank you for such a vivid visual.