What Does it Mean to be Pro-Life?
In October, we reflect upon ways to promote our commitment to the pro-life cause. Last week's Gospel message encouraged us to be good stewards of the Vineyard that is entrusted to us. Perhaps metaphorically we are reminded of our brothers and sisters who enter this world with mental retardation or other kinds of handicaps (cystic fibrosis, cerebral palsy, etc.). In some cases, these children are aborted after a genetic screening detects their condition. The church rightly stands against this, of course, but when we encourage the birth of all infants do we also take into account our responsibility of supporting these children throughout their lives? And, of course, their families? Does the Church speak out as much as is needed on this responsibility?
Four decades ago Geraldo Rivera made an unannounced visit to the Willowbrook Developmental Center on Staten Island, New York. He discovered New York citizens—those with mental retardation—living in conditions of incredible filth, neglect and abuse. A visiting congressman is quoted in the film saying "I've been in the worst jails and penal institutions in this country, and the worst brigs in the military, and I've never seen anything as horrible." Rivera did a follow-up ten years later (1981) on ABC's 20/20 and found many improvements, but there were still many more things needing to be done. These two television shows prompted outrage but even more—meaningful changes and oversight within institutions and programs for the developmentally disabled.
Recently I discussed Willowbrook: The Last Great Disgrace with students in my class at Marist College. Thinking aloud to myself, I wondered if there were things going on now in the world—circumstances regarding people with developmental disabilities—that, in future decades, would cause concern or even outrage among others when they look back at these decades of the early 20th century with historical hindsight. One of my students sent to me a recently clip from the Today Show where Ann Curry reports on the still-degrading conditions present where the developmentally disabled are cared for in Serbia. The horror might even surpass what Rivera found in the USA four decades ago.
Just as every year Christians celebrate the tremendous leap from death to resurrection, another recent story brings joy to us amidst the sorrow from Kosovo and other as-yet unknown places. In the October 4, 2011 National Review Online, Kathryn Lopez celebrates a young woman with Down syndrome who has been named Homecoming Queen at her high school. Wouldn't it be great if every parish found a way to celebrate citizens who have been born with different genetics than the rest of us? Lopez cites the blogger who discovered this story:
One downside to going to an all-girls high school was that we didn't really have the true experience of homecoming: The pep rally, the football game, the dance, the homecoming court, etc. I never really thought much of having missed out, but now that my own daughters are attending a public high school -- and one boyfriend is a contender for Homecoming King -- I can see that it is really something to experience. [Here is a young lady]known around the school for being a real sweetheart, and a true blue fan of her high school football team. She and her parents were simply thrilled that she made the top four. Watch as Mariah Slick -- who just so happens to have Down syndrome -- is announced Homecoming Queen with her dad by her side.
William Van Ornum
Many thanks for reading. Let's hope for more Homecoming Queens (and Kings) from the folks who we term "developmentally disabled." Sad indeed about Serbia...bvo
My reaction was similar to yours! As a future teacher, you will be in a good position to encourage the student body to be sensitive to the peers who have "special needs." Kids pick up the attitudes of the adults around them, and when adults act inclusively, the children pick this up and will act similarly. tx. bvo
Many parents, such as myself, depend of the state of CA for services and resources for our children. Some years ago the state passed "The Lanterman Act" which gives certain rights to the developmentally disabled and certain services provided through a network of Regional Centers. One of the rights is for the person to live in the least restrictive environment. As a result the state institutions discharged most of their residents to their home communities. Some communities, school systems and families lacked funding and resources. A lot of advocacy and political maneuvering took place. Now, in this economic climate, there is talk of gutting the Lanterman Act nd already services have been cut by the Regional Centers. It is very anxiety-provoking for me as I am planning for my Childrens' care after I am incapacitated and die. The least restrictive environment is their own home where they have lilved all of their lives. But, if my son, who is dually diagnosed with mental illness must be placed out of home, what happens to my daughter? These are the kinds of grave problems that parents face.
On a postive side, there is an organiztion: The National Catholic Partnersip on Disability which has resources for dioceses and parishes. There is also National Catholic Network on Mental Illness. What is needed is for the parishes to organize a ministry for our children and families using materials from these CAtholic organizations. I've always thought that the Right to Life organizations should take on this role.
When I saw the video of the Homecoming Queen and her Dad I immediately thought about how much loved she is and how well taken care of by her family. A beautiful story!
Are you serious? The Church speaks out as strong or stronger concerning children and families than any religion or special interest group. You have to be in a cave to think otherwise or to even ask the question.
Thanks for pointing out how certain other "hot button" issues seem to take over the discussion ground. Interestingly, last year we discussed here the case of a woman who was executed-despite evidenced of her being mentally retarded. You might find this story interesting in view of our class in Psychological Testing and also in view of the Commonwealth of Virginia's historical record on forced sterilization of the mentally retarded, covered in chapters 1 and 2 of our textbook. tx bvo
Your question deserves a thorough answer, as I suspect it may be in the minds of other readers. I was thinking specifically of the Kosovo situation, which "broke" in the media via a secular news outlet. I have heard first-hand reports of severe abuse of the mentally retarded in Africa, and I have yet to hear these included in the many lists of injustices and poverty which the Church aims to address on that Continent. Perhaps someone can offer us more info? Perhaps the Catholic Foreign News Services will address these sad situations?
Another part of my thinking involves how certain "hot button" issues in the pro-life area seem to garner nearly our total attention, while others remain in the background. The topic I write about here, from my view, remains dwarfed by the others. i suspect that as a regular reader you have a good sense of what I'm talking about.
Finally, those now attending Catholic schools have limited direct experieced with those who are developmentally disabled-not due to direct "denial" but because public funding pays for special education services in public schools. It is much harder for Catholic schools to harness this funding, although recent presentations at the National Catholic Education Association (NCEA) are showing creative ways for Catholic school districts to access this funding. So let's hope there will be some Homecoming Queens and Kings in the future of the kind above, albeit in Catholic schools.
I hope you can see that my asking the question I did is not a way to find-fault with the Church, but rather to encourage greater participation in this area. tx. bvo
(1) I suspect there is more unhappiness in general in the developmentally disabled population. Since much depression is due to "learned helplessness", a higher incidence of uhappiness makes sense because these folks many times have to ask, wait, or "act out" to get others to help them make things in their life come about. There i even a speciality growing within psychiatry and psychology, the "dually diagnoses", those with psychiatric problems (often major depression) and developmental disabilities.
(2) Many/most need special attention, especially when very young. If you revisit the Willowbroook or Serbia video clips above, you will see the staggering suffering that occurs when special attention is not provided. Fragile? Approach them with the same human gentleness which any other person deserves.
(For our Republican/Libertarian readers, note that Early intervention programs are one of the most cost-effective education programs, saving millions of dollars of government expenditures in future years, kind of like an inverse "social security".)
(3) Yes-we (and they) recognize false sympathy, condescension, or Pharasaical (sp?) attempts to spend time with them to look good to others. (But are such imperfect interactions not better than the kind of utter neglect depicted at Kosovo or Willowbrook?)
(4) A diverse and wonderful group of people! One of the high points of my week is when, each week, I visit a large center that serves 300-400 developmentally disabled folks!
(address, if you wish....)
If you went to a Catholic school, what kinds of efforts/programs involved the developmentally disabled? Could more be done?
What kinds of programs, services, did you observe if you went to a public school?
In your parish, are there certain "hot button" issues that seem to be addressed at the possible exclusion of others? What are parish activities you've seen that focus on the developmentally disabled? Are more needed????
Often children themselves are the kindest...especially toward the most vulnerable, and as you point out, they learn this by experiencing love from their parents and other important persons in their lives while growing up. bvo
I want to reply to your question about the public school experience you directed toward your students.
When I was in public high school, it was the beginning of mainstreaming the disabled. There were special classes for these students, but they were on their own between classes. Some of my fellow students did not know how to respond to this new kind of student. Most of us just ignored them.
As you probably know, teenagers are big into conformity despite their frequent nonconformity, and the disabled students, particularly those with mental disabilities, did not conform. They made the typical student uncomfortable, and the reaction of some was to make fun of the disabled students. I am thinking particularly of one girl who drooled and could not speak, who seemed both intrigued and frightened by her new circumstances.
I did not make fun of the student, but I also did not engage with her. The joking of the other students made me uncomfortable, but I did not know what to say until after I had graduated and had the opportunity to see this student in a restaurant with her mother. There I saw a different person who had an emotional bond sustaining her, and I thought that the mainstreaming movement was the stupidest thing that was ever undertaken because of how it was done.
It is wonderful that people, generally, and teenagers, in particular, are these days able to feel compassion for people with mental and physical disabilities, but it wasn't that long ago that these people were shut away as embarrassments to their families. These days, people with disabilities come to schools with assistants who help them and engage with the other students, which is so much better.
I think Bill's question about the church which you quoted is very appropriate and worthy of discussion especially this month dedicated to respect for all life. I can only write from my own experience: personal, voluntary and professional over a span of 45 years. In all that time, involved as I was in different parishes, there has been very little support or speaking out on behalf of the developmentally disabled or mentally ill. I hope by writing of my own experiences to (very poorly I have to admit) bring awareness 0f the sufferings of our families . I think if Catholics were more aware they would respond with Christian love and support. It is a matter mainly of education and a blog such as this one is very helpful!
The suffering of families is often immense. When parents are lovingly supported and given adequate resources, the children thrive. That kind of support is very hard to attain. As I earlier pointed out, in the state of CA which has a humane law that provides rights and services to the developmentally disabled, services are being cut and threatened by the financial criisis. I think of states such as Mississippi, Alabama, etc. and wonder how badly their people are suffering. (Not to mention, Kosovo, Africa, India and China).
The stresses on families may be unimaginable to many. As a social worker for Child Protective Services, I knew far too many families in which the disabled child had been abused or neglected. The stress on marriages and frequency of divorce, leaving one parent the responsibility of raising and caretaking the child is common. When I was divorced and committed to the care of my children I did not seek an annulment as I knew I would never remarry and I knew that my professional growth and promotion were limited. That is reality.
I wonder if any studies have been done on health and morbidity of parents. I once had a large support network of other parents. I now have only one person as the others have died or are incapacitated. Depression, the grieving over losses, and anxiety about our children's futures are part of our lives. We are sometimes in as much need of services as our children!!
Welcome back, Bill.
This video shown at the end of the article demonstrates how accepting and welcoming people have become regarding people with disabilities. I was thrilled when I saw the young woman with Down Syndrome receive the title of homecomming queen! I have a cousin with Down Syndrome, and it brings me gret joy when I see people attempt to make my cousin happy. The people who attended high school with the young woman with Down Syndrome truly made her dreams come true by voting for her; it is admirable that people have become so accepting of people with disabilities since earlier decades.
It is easy to say, “I am pro-life” however, it may not be so easy for certain parents to agree to taking on a 24/7 responsibility over a special needs child. When the encouragement of birth to all infants is administered, we need to concentrate more on what happens next: what care will the child be given, will the child have a good life, will the child be in a good living situation, will the child be given the help that he/she needs etc. Most of the time, in these sad circumstances, the child has no control and it is solely the responsibility of the parent.
Learning about Rivera’s reports on Willowbrook brings chills up my spine. It is not fair and unacceptable. When brought to an institution as awful as Willowbrook, the child is unable to grow in every sense of the word, they are not given a chance. It is important when making the decision to be “pro-life” that the child will be supported throughout their lives.
Watching Mariah Slick’s father cry tears of joy as his daughter with down syndrome wins Homecoming Queen was indescribable. Mariah was supported throughout her life and continues to be supported and that has brought her far. This makes me believe that any of those children in Willowbrook could have been given great opportunities and happiness just as Mariah Slick had if our backs hadn’t been turned on them.
Perhaps we should be focused less on being “pro-life” and “pro-choice” and really look into the issues it raises such as responsibility.
Unfortunately, although America has been progressing, it is unfortunate to see that other areas in the world, like Serbia, are not doing as well as other countries like America. I also know for a fact that Japan is almost no better when it comes to children with a disability. In Japan, it is normal for society to conform to the norm. There is a saying in Japan for what should be done those who stick out compared to the rest of society: “hammer in the nail that is sticking out.” Citizens who are loud and outspoken are looked down upon by the rest of society. Parents of children with disability are ashamed of being looked down upon by the rest of society and try their best to seem “normal.” Many times, those with a disability do not get the luxury of leaving their own house. They will receive the love of their parents, but because society does not want to have an abnormality, the parents will hide their child away for the rest of their life. While I was in Japan, I have only seen one child with down syndrome. It is sad to know that parents would rather put being ashamed of what others think of them in front of the love for their own child.
I was happy when I read your name under the posting.
In Ireland growing up and in the schools I went to there was great care for the disabled and I know of many people who deal with them.
In Rome I had a friend who was in charge of the spiritual formation of teenage boys and he would always invite them to come with him on his visits to houses of care for those with mental and physical disabilities.
He recounted to me the story of one young Italian boy who was repulsed the first time he went there and in true teenage fashion stated the same to my friend.The problem was that after the visit my friend brought all of the boys to play basketball and you couldn't get the ice-cream before you ate your vegetables so to speak.After a few encounters there was an incredible change in this young guy and he soon built up a great rapport with a few of the disabled people and it had an impact on him in other ways too.
My own niece is in a wheelchair and as the years have passed I have come to see it less as an imperfection(though it is difficult for my sister-in-law) and more as a particularity. God makes us unique!
I offer you this song sung by perhaps Ireland's favourite singer which speaks of the autism of the songwriters son.
It hit all too close to home when Ann Curry pulled back the sheets on a 21-year-old patient. Being a 21 year old myself first made me think of all the things I’ve seen and experienced in my lifetime and secondly, think of all the things that patient hadn’t seen and experienced. While I sit at my desk, in my own room, in a nice house, with my laptop computer and ipod tightly attached to my side, I cant help but feel absolutely unappreciative for what I have. While I gallivant around this world, there are people that only wish to be flipped in bed so the atrophy wont set in. I always thought that I was good at looking at things from others perspectives, but I find it nearly impossible to place myself anywhere near the nightmare these people are living. Id be better off trying to place myself in the perspective of the cattle that receive better treatment. All in all, the “Serbian Willowbrook” has made me realize how lucky we ALL are, and that the givens in life like walking or nurturing human contact are not promised to everybody. We must appreciate what we have, no matter how small or minute it may seem, because no matter what, someone in this world dreams for what you have.
However, I did not have the same reaction after hearing about the conditions at Willowbrook. These are human lives, deserving of the same rights as any other individual. That is why the question of abortion would not even be an option in my eyes because all unborn lives are a gift and all humans deserve a privileged life just like you and me.
I've just been reading some of the other postings on the other blogs-including those on "saints" and Pope John Paul I who burst upon our world like a bright meteor and left too quickly.
Perhaps Josh whom you describe a a "ray of sunshine" is a similar gift to the world as the individuals just descrbed.
Does anyone know if developmentally disabled persons have ever been canonized?
Bonnie, you will meet many others like Josh in the future! bvo
An easier question is whether any saints had mental disorders. Hagiographies describe a number of saints having eating disorders, OCD (St. Ignatius) depression (Mother Theresa). Anxiety and depression during the dark nights of the soul. Reading about these saints gives those of us like me who suffer from some form of mental disorder, comfort and hope.
Of course I think that my children are saints, though I doubt they will be canonized!"
I was speaking to a friend recently who suffers from OCD in a bad way.He went on the camino fo Santiago and as he was describing it all it was uncannily like the story of St Ignatius.
There was a man with an incredible amount of OCD.
In his biography or autobiography he shows how he uses his OCD or how he overcomes it in spiritual ways.He was a little bit of a hypochondriac and in one incident when he went with a doctor friend to a house of someone suspected of having the plague Ignatius caressed this person on the head to console them.Later as he was leaving the house he noticed a little mark on his hand and started to think that it may be the onset of the plague.What did he do?The Mad Basque pushed his entire fist into his mouth and said to himself "if your hand has this illness your whole bloody head can have it too",problem solved.
His life story is fascinating and his spiritual genius unmatched in my opinion.
I wish you God's blessings in all you do. My best to your lad, too.
I remember talking with my mother, a "gifted and talented" special ed teacher - the opposite end of the spectrum, about my joy in working with these students. She said she would only want to help them by doing everything for them - to which I remember saying: how will that help them? I do think many well-meaning people don't see the potential in many of the developmentally disabled and therefore have very low expectations; I wonder if that can create an atmosphere where subhuman treatment is seen as OK? Where the beautiful potential is not seen, not nurtured, and therefore the level of care is somehow diminished relative to the vision of what these special citizens can "do"?
I have recently taught gymnastics to a young girl with Down Syndrome, the only such child here on the island, and her mother kept putting her in my class because I was "the first teacher who worked her to her potential." Maybe I missed my calling! But aren't we all called to live and grow to our potential, and in turn to help those around us realize their potential as well?
Thanks for your carefully written responses-always a good blend of personal experience and considerable reflection of other sources. bvo
Interesting responses from your past.
Wow...only one Down syndrome person on the entire island where you live!
That's the same number as lives at my house! :-) bvo
The book "A Thousand Frightening Fantasies" (NY:Crossroad, 1997) features St. Ignatius and points out that his own "self-cures" are exactly the same as what modern psychologists do in cognitive-behavioral tgreatment. The example you give would be termed "response prevention + exposure" with some "flooding" added. bvo
We can be thankful that in the USA and many other places-things have improved markedly for the developmentally disabled.
Serbia is extremely sad.
Please, don't cut out of school yet. Maybe a bunch of us should take to the streets in Serbia? (just kidding...) bvo
Thank you for your comments! bvo
It is upsetting to still see so many stereotypes today about people who are different. I want to be involved in special education to help those who need it but also to educate others. People need to start looking for what people who are considered mentally handicapped CAN do-looking for their abilities rather than dwelling on their disabilities. People may be shocked at what they can learn from some of these great people who are sensitive, intelligent, and loving beyond all measure. It is frustrating how there is a stigma and misunderstanding of the intellectually disabled. The term itself has changed from mental retardation to intellectual disability which should be upheld.
The video about the homecoming queen is a great step towards acceptance. However, I do not think it should be over-publicized and made to be such a big deal. This is because she is just like any other high school girl who got voted homecoming queen. Good for her and the people who voted for her, but she is just a normal girl and should not be receiving so much attention to the point where it seems to be just about the disability, than about who she is as a person.
People with developmental disabilities deserve to be treated as the full citizens of society that they are, nothing less. The self-advocacy movement can help to promote the rights of those with disabilities, allowing them to make decisions about their life and function in society. I hope that videos such as those about Willowbrook and the conditions in Serbia will open people’s eyes to the underlying issue of stereotyping and judgment.
Despite the progress in the United States since Willowbrook, there are still issues to be worked out. I attended a Catholic high school, and I was not impressed by their idea of special services. There was never an aide in any of the classes, so students who needed extra support were pulled out of the class. The resource room and special education teacher were located in a trailer outside of the school, which as you could imagine, was pretty alienated. The school itself did not actively acknowledge it’s special education resources, so if I were a parent with a student who needed more support, I would not send my child there. People like us going into the field of special education have goals to raise awareness and spread our knowledge in countries that need a complete awakening (Serbia), and to also make sure everyone in America gets the resources and treatment necessary for success.
Good points all. And let's hope the day is coming when a Down syndrome Homecoming Queen will be a commonplace occurrence and won't require special media coverage. bvo
I cringe a bit at special education students being pulled out of the class in Catholic school and taught in a trailer. But as has been noted, there are systemic problems involving how the government pays schools for special education. Glad you have chosen to work in special education! bvo
You caught my main theme perfectly. It's easy to talk about pro-life etc. but much harder to devote our time and resources when handicapped children with genetic problems are brought into the world. And perhaps to not do so is a form of hypocricy and neglect? Perhaps I am being too harsh, but the thought does cross my mind. tx bvo
One great thing about teaching is that I learn so many things listening to students and what they learn on their travels. What you mentioned about Japan is very sad. bvo
I was completely shocked and confused when we watched Willbrook in class. I could not believe people treated other human beings like that. I was so disturbed to see the conditions these people had to live in and how they were given no chance at all to get the help they needed. I do not understand why these people with disabilities were treated like they were not people at all. I am thinking about being a special education teacher and I cannot even imagine how this could have happened. It's good to know that society has changed it's view but I'm still worried that this is occuring in other places in the world. People with disabilities deserve the same rights as any other person.