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Living Independently with Disabilities

On the cover of the most recent issue of Faith & Family, a magazine for Catholic families until recently owned by the Legionnaries of Christ, is a picture of a beautiful child with Down's Syndrome. The idea is to further the pro-life cause by showing children with disabilities in a positive light.I know the motive is good. But the fact is many children with disabilities do not meet the standards of physical and mental normalcy. And Catholics who tend to be concerned with the pretty picture of a holy domestic life can be pretty ruthless when it comes to maintaining the integrity of that picture. I know from my mother, who was long active in religious education for the mentally handicapped, that some priests and nuns and DREs and parents didn't want such children receiving first communion with the rest of the class, precisely because they would ruin the perfect photograph.But I have even stronger worries about making the case for carrying children with disabilities to term on the grounds of the cuteness of small children. In fact, one of the biggest worries that face parents of children with disabilities is what will happen to them when they are no longer small, young, and cute. The older man with schizophrenia, the twenty-five year old girl with both Down's Syndrome and an Autism spectrum disorder are still someone's child--they are the children of their parents on earth, or in heaven, they are the children of Mary, the mother of us all, and they are the children of God. They are too frequently seen as ugly annoyances, impediments to those who present themselves as modeling a beautiful life of faith & family."Cute" fades--for us all. Rather than trying to fit those with disabilities within conventional notions of beauty, I think a little bit of Hans Urs von Balthasar's theological aestheticsis in order--the life and death of Jesus Christ actually ought to reconstitute our notion of what counts as beautiful.I was in Rhode Island last weekend, and came across an article about an innovative state program to help people with disabilities live independently in the community. It's far more cost effective than group homes. It integrates them into the community in a more natural way. It's good for the college student caregivers. It's good for the families. And it's under deep threat in the current budget crisis.Supporting programs like this because they contribute to the common good--the good of us all, of each and every one of us-- is part of what it means to build a culture of life. I hope Bishop Tobin agrees.

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I'm afraid the link is broken. Once it's fixed I'll look forward to reading the article.

People respond positively and immediately to beauty. Showing something in an unequivocally positive light is much more likely to engage their sympathy and generosity than displaying it as ugly in order to elicit shock and outrage. Go where people are, not where you think they should be.

I was in Rhode Island last weekend, and came across an article about state resources to help people with disabilities live independently in the community. Its far more cost effective than group homes. It integrates them into the community in a more natural way. And its under deep threat in the current budget crisis.

"More natural" is an awfully subjective descriptor. I think an excellent case could be made for group homes, or even institutions. Think what a person needs - companionship, support, security - rather than what you think he or she should need - presumably independence and "dignity". Independence, especially for the extremely vulnerable, isn't all it's cracked up to be, and dignity comes from within, not purely from wide social integration.

And what do you say to the person who says, "Well that kid with disabilities on the magazine cover is okay. .. . but YOUR kid will ruin the picture."

Your hypothetical :o) I don't go looking for people like that.

Say nothing.

I don't know much about Downs Syndrome, but when I was about 20 I was diagnosed with a degenerative eye disease. One of the first things the department of rehabilitation did was take me to visit an institution where visually impaired people lived and where they wanted me to move. It was so creppy! The building was huge and looked almost Dickensonian, all the people living there were adults, but the staff treated them like children, and the skills they were learning were things like how to make chess boards. I turned it down. Later, when I couldn't find a job, I took a tour of a "sheltered workshop" ... a place where the state employess people with disabilities ... compared to most of the people working there, I was relatively attractive, young, could pass as "normal", and it was again creepy how the staff almost fawned over me. Fortunately I found a regular job istead, as that job paid only minimum wage with no insurance.I don't know what's best for people with disabilities. Almost all those I've met (and me too) have had an overwhelming desire to be as "normal" as possible, no matter what the cost. That can really skew the choices they make and the choices others make for them.

"Think what a person needs companionship, support, security rather than what you think he or she should need presumably independence and dignity. Independence, especially for the extremely vulnerable, isnt all its cracked up to be, and dignity comes from within, not purely from wide social integration." David, you're right--I think I should have titled the post "living in solidarity with people with disabilities." But I think that's what she has.

Forgot to mention, this reminds of L'Arche.

Great reflection, Cathleen.

Great thanks to Crystal for her invaluable contribution. Independence and dignity are abstracts highly regarded and they should be. Banners on the wall might usefully remind us of them. But, when it comes down to the individual, and it always does, the details matter. Re-read Crystal's comment thinking _independence_ as you do. Last evening, I was in a group home where four grown men with different limitations live. I am certain that, every single day, each has "an overwhelming desire to be as normal as possible, no matter what the cost", as Crystal knowingly put it. Each is able to function independently in some respects but not in important others. With support tailored to their needs and respect for their dignity, maintained in spite of what they do, don't do, or look like, they carry on fairly well if one considers the alternatives. That's "independent living" for them at present and probably for many years to come. What seems natural and cost-effective for most isn't so for all. Cathleen - Your revised title is excellent, in contrast to the appealing but too general original.

The church has programs for the handicapped. But in so many cases no compassion, love or acceptance.

My sister of 69 years is mentally handicapped. She lived a sheltered, coddled life with my mother until mom died in 1978. Then my sister turned out to be hopelessly incapable of independent actions and life for quite some time. A blessing to her and to my sister and I was the state of Iowa which has one of THE BEST programs for people like my sister. She spent many years in group homes and now lives semi-independently in an apartment complex that is closely monitored and which encourages as much independence as possible.Maybe if she was made more independent much earlier in her life she could have functioned more semi self-sufficiently earlier on, but she wasn't. I think God every day for the wonderful programs which have patiently advanced her to the degree that she can handle. I will always be strongly supportive of group homes and similar programs.

In 2007 I wrote an article for "Faith & Family" magazine about the birth of my daughter with Down syndrome. It was warmly complimented by now editor Danielle Bean, herself the mother of a special needs child. Since then, I have seen her become an outspoken advocate for the human dignity of ALL those with disabilities, regardless of age, both in the magazine, and in "National Catholic Register", even when her insistence that using the word "retard" is hurtful is met with some resistance. "Faith & Family" always features children on its cover, the photo of the little guy with Down syndrome is merely a continuance of that custom, not a statement that the magazine only considers such individuals 'cute' till they reach adolescence. Please don't generalize about us 'holy domestic life' types. We are not your mother or mine for that matter.In our mothers' day, such children were institutionalized and the parents given death certificates so that they never had to visit them. There was a sense of shame associated with the disabled, which, thanks to inclusion has been diminishing. Or has it? Now 92% of babies pre-natally diagnosed with Down syndrome or other detectable anomalies are aborted. Some governments are offering universal pre-natal testing to 'lower the costs' of health care. Our children are becoming a drain on the system, it seems. So I welcome the efforts of editors like Mrs Bean to include our children in Catholic publications, and invite Commonweal to do the same. Diversity is a beautiful thing.

Mrs. Velasquez, I think it's great to give more exposure to people with disabilities in every context. (This is one of the reasons I like the Farrelly brothers, who include people with disabilities in their movies, and even did a (controversial) movie about the Special Olympics--but they didn't airbrush the phenomenon--not that they airbrush anything!) I understand that the people who make magazine covers are all really cute-whether normally abled or not. But my worry is that "cuteness" is not a specifically Christian virtue-period--in a baby, in a child, in an adult, in a "normal" person or in a person with disabilities. To the extent that any Catholic magazine tacitly suggests it is, I think it is a mistaken strategy to achieve a good end of respecting the dignity of each and every person as a child of God. It plays directly into the cult of appearances that dominates the larger culture. And doing that disproportionately disadvantages people with disabilities, particularly as they grow older.I think the result of trying to baptize cuteness is the very troubling blog post I linked to--which was written by a Faith and Family columnist, and even more worrisome, a columnist for the diocese of Savannah! The sentiments that she expresses there are precisely the sentiments that led to the passage of the "Ugly Laws," which prevented unsightly people from being seen on public streets in cities like Chicago.And my mother fought for the inclusion of people with disabilities in church services, people who were nowhere near cute enough to make the cover of an issue of Faith & Family--and I admire her greatly for that. This is in the past twenty years, well after the institutionalization of people with Down's Syndrome had stopped being the norm. People who wouldn't dream of supporting abortion rights wanted to erase the kids with disabilities from the picture--or apply stringent norms that would exclude them from communion.

" the cult of appearances that dominates the larger culture."Cathleen --You've hit the nail on the head. This culture is *literally* a shallow one consumed with what our surfaces look like. How did we get to be such a silly people? Hollywood? Advertisements? The demise of the Humanities -- nothing better to think about except maybe sports?You mention Chicago keeping some people out of sight? Were there actually laws that did that? Incredible.

Cathleen (11:14 am), I'm not a great reader of magazines, but I can't think of any I've seen anywhere, including newsstands, that put unpleasant things on their covers. The cover is meant to attract to the magazine, not repel from it. Are you suggesting that Faith and Family should have put the photo of a particularly pitiful handicapped child on its cover? That's not a sarcastic question - if you're not suggesting that, I'm not sure what you think they should have done.

Ann: "No person who is diseased, maimed, mutilated or in any way deformed so as to be an unsightly or disgusting object or improper person to be allowed in or on the public ways or other public places in this city, or shall therein or thereon expose himself to public view, under a penalty of not less than one dollar nor more than fifty dollars for each offense."Chicago Municipal Code, sec. 36034 --repealed in the early 1970's.David, I'm not sure that's true. Time? Newsweek? Commonweal? America? St. Anthony Messenger? It's true that women's beauty magazines don't do that--or People magazine. But why should a Catholic magazine imitate them?I think the problem is that the strategy undermines the goal, for reasons I've stated. To put it another way. THIS child wouldn't be kicked off the streets of Chicago by the Ugly Law. But what about the ones who would? F & F's approach does nothing to help them.In general, I don't think Catholic magazines need to foster a cult of appearances--and I have real problems with the Legionnaries of Christ for doing just that, in addition to the vast other harms that the order has wreaked upon the church. I don't see why the option is close up beauty or close up "pitiful," to use your term. Why can't you put pictures of kids playing, or kids with disabilities in their families, eating dinner, on the cover? Action shots, relational shots. This is a full-on close-up. The only thing in it is the child's beautiful face. Most people--even kids--wouldn't look good in that tight a shot.

Not only is this country supremely superficial, it it has also lost its heart. Sorry to sound like the shocked old lady I am, but we're doomed.

Don't lose heart! It's better now. The Americans with Disabilities Act trumps the message of the Ugly Laws.

To chime in, this sort of strategy also sets up terrible burdens for the families who do make the choice to have or adopt a disabled child. The message is that these children are angelic blessings, practically otherworldly beings that bring out the best in all who know them, "the best thing that ever happened to us," etc. When in fact, they are children, and like all children, flawed, challenging, frustrating as all get out. Often more so. Where does this leave the parents and siblings? What if the child isn't the best thing that ever happened to the family? It's a set-up for failure -- just more grist for the modern American mill of parental guilt and aspirational striving.And it does little to promote the notion that these children are fundamentally human. They are not monsters -- a point that needs making, alas -- but they're not angels, either.

Thank you, Cathleen. I was actually sitting here a bit stunned. But we've a long way to go.I can't help but think that what the social scientists have been saying for a couple of generations is true -- the escalating amount of violence in our media has made us so insensitive to the feelings of other people that now many people are in denial about the humanity of others. (Yes, abortion is relevant here.) I don't know how to legally reduce all that fantasy violence, but it's got to be done, and freedom of speech take the hindmost. There has to be a better way.

I guess I'm just not into deliberately causing people to become uncomfortable - no matter how good the cause. I understand that activists probably think that attitude is deplorable. Sorry - we're all different.

"We're all different" seems to me to be the ultimate statement of relativism.

"Sorry were all different."In more ways than not, David; in more ways than not.I hope some future non-JPII (will there be any?) bishop makes that his Episcopal motto: Paenitet - nos omnes diversa, maybe?

We're all the same?

True, we are all different to some extent. But relying on our differences alone to be a foundation for moral behavior doesn't give our likenesses due regard.

Ann (4:39 pm), I don't think we're dealing with a moral issue here. I just said, essentially, that I'm not an activist.

If you are talking about dealing with disabled individuals, where this began, each is different, and failing to respond according to his or her particular needs and capacities causes pain all around. Gross failure to address the differences may raise questions of moral behavior. Some of the difficulties earlier in this discussion, I suspect, came from splitting the world in two - people with disabilities and people without. Crystal W., Leticia V., Jimmy Mac, and I referred to 4 very different kinds of disability situation. Notions of independence and how dignity should be respected differ substantially among the four, as do opportunities and requirements for community awareness and support. Broad generalizations go too far, after a few general goals are stated. Displaying disabled on magazine covers or elsewhere could advance public awareness and might reduce unjust prejudices. It also would serve to remind disabled and those close to them of what they can't forget and don't need reminding of. Some prefer fewer reminders, not more. A middle ground needs to be found between exploitation and obscuration, starting with respect for disabled individuals and then considering benefits to others.

Jack (6:41 pm), your note reminds me what an arbitrary category "disabled" is. Everyone is advantaged in some ways and disadvantaged in others. We're all "differently abled".Singling out a few types of disabilities for political attention and economic assistance is, really, doing two things. First, it's acknowledging that we can't balance every significant human imbalance by selecting a few groups as proxies for the rest in order to give ourselves the chance to salve our natural sense of guilt and obligation to people less fortunate than we. We can't do nothing - our consciences would not allow that. The second thing it does is to give us an excuse for social solidarity, not so much with the disabled in question on but rather with other people who have also decided on the same groups. And, of course, it lets us congratulate ourselves both for being compassionate people and for belonging to groups of people who are similarly compassionate.That's not meant to sound cynical. It's just meant as a reminder of how arbitrary and self-limiting charity and social activism are. Charity is necessary in all civilized societies, I imagine. It's one of the ways we keep ourselves from slipping into total narcissism. Social activism seems to me to be a way some people have of externalizing their need to perform charity. But others do it in other ways.We're all different :o)

One thing I notice is the separation of groups into the diabled and the able, as if there's no chance the people in those discrete groups will ever change enough to change groups. So easy to advocate keeing the diabled ou of sight when you know you'll never be one, except of course, you can become one in an instant given the right circumstances. Maybe showing people with visible disabilities on magazine covers makes others uncomfortable if they have any empathy - they can imagine what it mght be like to be them, and that is scary and painful. But the cost of hiding what's ugly is too high, and I think the only way it can stop seeming "ugly" is if we're willing to look.

Crystal, you're so right. I went from abled-but-clutzy to disabled with a fall down the staircase at 3:00 am. two years ago. I needed about six months of rest and elevation, surgery, and intensive rehab. I became so thankful for the Americans with Disabilities Act, which let me do my job, go out to restaurants, see movies, and be part of society through its mandates for public accommodations.It changed the way I think about the whole issue.

Great topic and responses, and thanks to Crystal for chiming in with her experiences and pointing out the way that the disabled are treated like children. I've seen this happen with the sick. When a close friend was dying of leukemia, those of us who were trying to coordinate and provide care would meet offsite to see who was available to do what. One of them stopped calling her by her name and started to refer to her as "our girl" and "our angel." Ronnie would have slapped her had she known. I might have helped ...

A positive story about creating jobs for people with autism:http://opinionator.blogs.nytimes.com/2011/06/30/putting-the-gifts-of-the...

David S, --Looking at the people I know, I would say that the activism of most people is a matter of morality. It's a matter of what we owe the less fortunate, not just a matter of acting on natural feelings of compassion. The latter come and go. Moral obligations stay.

What you young people don't seem to realize yet is that because many of you will live to be 80 years old and older you too will most likely be disabled, even for years. Your disabilities will range from minor issues such as losss of mobility, hearing or vision, to total dependence.Let me urge you to visit your old folks in nursing homes. My brother had to be in a home for 14 years, and I saw the neglect of many people, not by refusal to provide physical necessities, but the neglect of not visiting friends and family, the neglect of treating those disabled as if they were already dead. If you live long enough you might very well be one of them one day. So have a heart now -- visit!

Ann -- my aunt just died this week, and one family member's comment was: "I really wish she had not died alone. I wish there had been people around her when she drew her last breath". Relatives had visited her the day before, but they had not stayed overnight. She died in her sleep.I had not thought about it. Wanting a circle of friends or family for one's very last moments, isn't that a sentiment of yesteryear? Indeed, there is something lonely about the image of an ill, elderly woman dying alone, even if she is unconscious. But it had not occured to me. Not that I could have done anything anyway, being thousands of miles away, but underlying that are some social norms and customs that I think may be disappearing. I imagine people closing ranks around the very ill, taking turns staying by their bedside. Doesn't that seem rather quaint? Now we have drugs to alleviate pain, machines to measure the fundamentals, nurses on call if machines detect an emergency situation, so a lot of the caretaking no longer has to be done by the friends and family, but what about the love?

"What you young people dont seem to realize yet is that because many of you will live to be 80 years old and older you too will most likely be disabled, even for years."Maybe not, Ann. Recent news reports suggest that in many parts of the country, life expectancy is taking a nose dive. "I imagine people closing ranks around the very ill, taking turns staying by their bedside. Doesnt that seem rather quaint?"I think this is the wave of the future, Claire. Dying at home is one way to save huge amounts of money in health care costs. My mother and I took turns doing all the comfort care in the last 10 days. The hospice nurse, who had been visiting once a week, came in every day to provide instruction and information. We were both at his bedside when he died.

I wasn't thinkIng about visiting the dying. Most of the people in nursing homes aren't dying. But many are in effect abandoned except by their very closest family and friends. Think the corporal work of mercy "Visit the sick". It doesn't say bring them medicine or food, just visit them.Many people end up alone -- widows and widowers with children in other parts of the country, or with relatives who have to work or are themselves disabled or partly disabled and can't perform the needed care, etc, etc.

Jean: one somewhat positive consequence of the health care budget crunch, perhaps!Ann: true, true.

Ann writes (1:20pm yesterday):

David S, Looking at the people I know, I would say that the activism of most people is a matter of morality. Its a matter of what we owe the less fortunate, not just a matter of acting on natural feelings of compassion. The latter come and go. Moral obligations stay.

I'd put it the other way, Ann. Our inborn sense of empathy comes first; it's a primitive moral sense. A more elaborate and more nuanced moral sense is developed on top of that.Of course, if you're arguing that a fully developed moral sense is more important on a value scale, you may be right. Value scales are personal things - yours and mine are likely to be substantially different, simply because we're two different people from two similar but in many ways very different cultures.

Ann (8:30 pm yesterday), rather than considering just people in nursing homes to be in need of companionship and visible shows of respect, wouldn't it perhaps be better to consider helping anyone who's particularly vulnerable? You don't have to be in a nursing home to be lonely, abandoned, devalued, in physical and emotional pain.

I see this as a much bigger issue than the people with disabilities being excluded. There are a lot of people out there who "mess up the picture". I'm fat and fifty something, so I have joined that group in a minor way. I remember when there were no black people on TV and no women shown in any capacity other than secretary when they were shown working at all. Poor people, minorities, people in nontraditional jobs or nontraditional clothes are excluded. Kids are even crueler, excluding this kid for having big ears and that one for having the "wrong" brand of clothes or shoes or bicycle.When I was a kid, I saw a horrible accident where a kid I knew sneaked out of the house during what was supposed to be nap time for him and his grandmother and lit a fire, and lit himself on fire trying to stoke it with gasoline. His injuries were fatal, but before he passed, he ran in circles in a panic, on fire screaming. My grandmother leapt several hedges and a fence wearing a dress and heels and caught him and rolled him on the ground to put the flames out. When I finally was able to look away, I saw that there was a group of local housewives on the street, where they had apparently been watching since well before my grandmother sprang into action. To me she was a hero. To them? She was ostracized. They were uniformly nasty to her from that moment on. They whispered that a woman who would do that would do anything. Unpredictable. Unladylike. Unacceptable. Messing up the picture. Should have waited for a man, but even a man wouldn't really know what to do unless he was a doctor. I was five. One of them was my piano teacher, who I fired at the next lesson and refused to return. I decided there and then what side I was on.I arukk see people who still hold values like these all the time. It isn't like they're trying to hide, They aren't. They're proud of themselves and proud of their shallowness in some incomprehensible way. They don't want any unpredictable or abnormal people messing up their picture and they're willing to fight for it.

Sorry for the typos.

David S. --The people in a nursing home, unlike us old folks who are not thoroughly disabled, can't get out and mix in the community unless someone takes them out. They are helpless in a way people like me aren't. I hobble along, but at least I can get out on my own. Also, because nursing home folks are not out and about in the community, others are inclined to forget they're still with us. True, visiting a place where a lot of people are on the way out is a big turn off. But visit anyway. You don't have to stay long. Talk about old times, or today's news. They're still people.

Susan, what an awful story, though neither of my grandmothers (who must have been about the same age as yours) ever waited around for a man to do anything. But, then, one grandfather was an alcoholic and the other was a bigamist.David, I didn't get that Ann was necessarily arguing we ONLY visit people in nursing homes. But visiting nursing homes may be the only way to force yourself to come to terms with how awful they are, even the good ones, and to demand better care when you or your family members are in that boat.

One day when I visited my parents' village, there was a new pastor. "What happened to the old pastor?" I asked. "Oh, his health started failing and he could not live by himself any more. Now he is in some nursing home somewhere, I'm not sure where, an hour or so from here." A few years later I heard he had died; at times in the intervening years I was not always quite sure whether he was live or dead. I am not aware that anyone from the village ever visited him.In my parents' village there used to be a house of religious sisters. They got old, some died, and the remaining three or four became increasingly weak and encumbered by health problems. One day it was decided that they couldn't live by themselves any more. After more than 60 years in the village, they were moved to a convent where, as we were told, they would be welcome, well taken care of, and would be able to continue saying their prayers on their own schedule as they were used to. It's more than an hour away. Now they only very rarely get any visits. That is one problem with nursing homes: when people go to a nursing home, it is often far from where they used to live, and then they are abruptly cut off from their acquaintances. Only their closest friends make the trip to visit them. Had the aging priest or sisters stayed somewhere nearby, I am confident that once in a while my parents (and dozens of other parishioners) would have visited them.

Jean (11:58 am):

David, I didnt get that Ann was necessarily arguing we ONLY visit people in nursing homes. But visiting nursing homes may be the only way to force yourself to come to terms with how awful they are, even the good ones, and to demand better care when you or your family members are in that boat.

I understand, Jean. And I've had enough experience with nursing homes to know what you're talking about. Believe it or not, though, some can be far less than awful - especially those run directly by religious groups - Catholics, Jews, and Quakers, for example.One thing that nursing homes can teach us is what a lamentable decision we make when we consign someone there, instead of caring for her or him in the bosom of the family. That's something the Church might do well to stress. It's one good reason, I think, to have larger families - for mutual support.

Not all nursing homes are awful places in the sense that the patients are not well treated. In all the years my brother was in a home I did not see one staff member being ugly to a patient. The place was comfortable, clean, the medical staff fine, and the food not too bad. The problems are psychological -- the patients know they can't leave, and we visitors are reminded that we too could end up losing our independence and being cut off from our community. The worst part is the loss of independence, apparently, but a disabled old person at home also loses independence and is often cut off to a large extent too. So visit the folks at home as well. And remember that care givers are often extremely appreciative when family and friends take over for just an hour or two to give *them* some relief.