In this issue we proudly feature Donna Biffar's book review published in Down Syndrome Quarterly by Michael Bérubé, author of Life as we know it. Ms. Biffar lives in Smithton, IL.
We encourage all families to attend the National Down Syndrome 2003 National Conference in St. Louis on July 11-13.
National Events
July 11-13. Join the National Down Syndrome Society and the Down Syndrome Association of Greater St. Louis for the 2003 National Conference, Making a Difference Together. The focus of the 2003 conference is working together to improve the lives of individuals with Down syndrome. Three conference tracks will offer sessions geared toward the interests of parents, family members, professionals, teens and adults with Down syndrome and their siblings.
- Program for Parents, Family Members & Professionals. The program will feature plenary sessions and dozens of workshops for parents, family, members and professionals. Some workshops will be targeted to certain developmental stages, including workshops focusing on a variety of adult issues.
- Program for Teens & Adults with Down Syndrome. The program for teens and adults with Down syndrome (ages 13 and up) will be a creative mix of learning and social activities. Every year, this program is a big hit with the participants as they work together to improve their communication, advocacy and life skills, participate in recreational activities and have fun at dances and socializing.
- Program for Siblings. The program for siblings (ages 13-20) is a great opportunity for participants to share their experiences with other siblings as well as interact with their own siblings who have Down syndrome in workshops and recreational activities.
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July 12. Festival of the Arts. Join us as we celebrate the creative talents with Down syndrome. Come see these talented musicians, dancers, entertainers and artists as they take to the stage.
July 13. NDSS Awards Ceremony. The Awards Ceremony will celebrate the achievements of outstanding individuals and organizations for their contribution for improving the lives of individuals of Down syndrome. Awards will be given in education, research, advocacy, volunteerism and community categories.
Location: Adam's Mark Hotel. 315 Chestnut, St. Louis, MO 63102. (800) 444-ADAM or (314) 241-7000. For more information contact NDSS at (888) 354-4694.
STARNet Region IV
Saturday - September 20, 2003 10:00 a.m. to 2:00 p.m. Fathers, Fishing, Fun & Kids. Location: Eldon Hazlet State Park at Carlyle Lake. Free for fathers and their children birth to 8 years old and their siblings. Free lunch of franks (hot dogs), chips and soda will be served. For further information call STARNet at 397-8930.
Down Syndrome Articles
Book Review. Barry M. Mitnick, Ph.D. Book Review Editor.
Poetry and the Languages of Down Syndrome. Down Syndrome Quarterly. Volume 7, Number 2, June 2002, p. 6. Reprinted with the permission of Samuel J. Thios, Ph.D., Editor, Denison University, Granville, OH 43023. E-mail: thios@denison.edu
Biffar, Donna. (2002) Down... Poems and Other Syndromes. Pudding House, 60 North Main Street, Johnstown, Ohio 43031. $8.95 plus $2.50 postage; shipping free if more than one item. No 1589980913 2002. Ordering: (740) 967-6060. Publisher's website: http://www.puddinghouse.com.
Reviewed by: Michael Bérubé Pennsylvania State University. E-mail: mfb12@psu.edu.
There is a great deal of poetry being written in the United States, but very little poetry about Down syndrome; likewise, there is an increasingly large body of writing about Down syndrome, but very little of it takes the form of poetry. Donna Biffar's new collection of poems thus presents readers with a sharp twist on Dana Gioia's famous question as to whether poetry can matter. Here, the question takes a more specific form, as readers are invited to think not only about whether the poems before them can "matter," but more broadly about all the discourses in which we have learned to speak and think about Down syndrome.
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Chief among these, of course, would be the language of biomedicine, a newly developed language spoken among tightly-knit tribal groups scattered throughout the world but clustered largely in industrial nations, groups whose initiation rites and cultural practices are exceptionally complex. And if not for the languages and practices of contemporary biomedicine, the lived reality of Down syndrome (and the lived experiences of people with Down syndrome) would be radically different than they are today—which is to say, yet again, that the advent of antibiotics, open-heart surgery, and amniocentesis (to take three epochal developments in chronological order) has rendered a world in which the lives of people with Down syndrome can be extended, enhanced, or prevented by the words of doctors. Rarely, by contrast, do the lives of people with Down syndrome depend on the words of poets.
It is no wonder, then, that Down offers us poems full of doctors. Writing about her son, Mike, in sharply observed moments from birth to age fifteen, Donna Biffar cannot not foreground the words of doctors; in the opening stanza of the opening poem ("The doctor said if he lives he might be good at art," in "Hundred Acre Woods") and in twelve of the first fifteen poems in the collection, the words of doctors serve as a kind of template or counterpoint for the words of the mother and poet. "I know/what the doctors say, /how they can keep his death away, but/some days are black as his breath/at night," writes Biffar in "The 21st Chromosome." "Doctors come listing strange names," we read in "Believing in Air," as we gradually piece together the medical details of Mike's young life-surgery, spinal tap, oxygen tent, asthma, and (of course) antibiotics. In the poem "For the Good of Michael," as her son "makes angels from snow," the mother reflects on the discourse of angels unaware and more mundane matters:
Inside I measure good
in careful spoonfuls
of pearl-pink medicine, knowing
this is what keeps him
alive each winter,
not angels or prayer,
the body, the blood
killing millions of killers
alive in each of us,
banded together like armies,
advancing.
Biffar's poems thus try to offer a language of inwardness, of subjectivity, in response to the language of biomedicine-and interestingly, it is often the subjectivity of the parent, of the poet herself, that is at stake, rather than the subjectivity of the medical subject. Mike, after all, "forgets the helicopter flight/he took alone just after birth" ("The Water Remembers"), and draws pictures of hearts "not recalling his bronchial lover or/those hot thermometer hospital years" ("The School Nurse Shows Him Body Parts"). In "Another Birthday Poem," Biffar writes, "He's thirteen today, recalling the seizure of his birth,/the plastic cake cover the nurses kept him in, /the tubes and wires bright as thirteen candle flames," but surely, as the poem acknowledges, it is not Mike but his mother who recalls these things, who looks back on "fourteen years of surgery and drugs" in "Beneath these retarded lights . . ." and who evokes doctors "chanting of your moon face/your simian crease, how breath might/stop dead in your lungs" in "Upon Your Breathing," the only poem addressed directly to Mike himself. The poems of Down, in effect, forge a language not spoken by, but in implicit dialogue with, the doctors who say that if he lives he might be good at art. Much of this language is the language of parental trauma and confession; some of it consists of attempts to reclaim and resignify words like "retarded" and "down"; and some of it serves as a vehicle for representing a child who will not appear in medical reports, a child who is irreducibly himself: "Crazed/ by light, the night's rest/resting in his bones, he crows,/chases sun beams down the hall,/his arms flapping like a wild cock" ("Chrysalis"). The poems of Down thereby show us, both in what they say and what they don't, that in order to understand Down syndrome, in order to understand people with Down syndrome, and in order to understand poems and other syndromes, we need all the languages we can possibly devise.
His 'wonderful life' goes on by Dick Ryan. Our Sunday Visitor. June 9, 2002, p. 12. Reprinted with the permission of Carol McCauley, CMcCauley@osv.com, Editorial Department.
According to the medical textbooks, Down syndrome is the most commonly occurring chromosomal abnormality, resulting when an individual possesses three, rather than the usual two, copies of the 21st chromosome. And every year in the United States, approximately 5,000 children are born with Down syndrome. Thirty-six years ago, Chris Burke was on of them.
But sitting in one of the conference rooms of the National Down Syndrome Society in downtown Manhattan recently, Burke talked about his life, his works with the society, his family and his dreams. This extraordinary young man travels around the country giving lectures on Down syndrome, is part of the three-piece folk band that does 150 gigs a year, has written a book, is working on a documentary and was the first actor with Down syndrome to star in a major prime-time television series, "Life Goes On," in which he played Corky Thatcher.
For more than an hour, Burke spoke with Our Sunday Visitor about how, in so many stunning, unusual ways, life goes on for him.
OUR SUNDAY VISITOR: Chris, when you talk to different groups around the country about Down syndrome, what special message do you try to get across?
CHRIS BURKE: I tell them we never think in terms of "disability" but "ability." And that it's also important to be determined about what we are doing in life, and to never give up on anything. My mom has always said that I'm a very determined person.
VISITOR: Do you address many groups during the course of a year?
BURKE: There are a lot all around the country, so I do a lit of traveling. I am sort of any ambassador for the National Down Syndrome Society so that, all during my career in public speaking, I try to express my feelings and thoughts about growing up with Down syndrome, especially going back to my childhood.
VISITOR: Are you nervous when you talk before big groups?
BURKE: No, I'm not. It's just like when I'm acting and I'm told to do a scene and that's what I do. I like talking to groups where there are children or where there are parents with children who have the same experience as myself.
VISITOR: As a Catholic, can you tell me a little about the role of religion in your life?
BURKE: Well, actually I'm a parishioner in two churches, the church of the Epiphany here on the Lower East Side and Our Lady of the Miraculous Medal out at Point Lookout on Long Island, where my family has a summer home and I usher at the 5 o'clock Mass on Saturday night. I also was an altar boy in that church when I was younger.
But there's one other thing about being a Catholic. Besides believing in God and all the angels, I also believe in miracles that can really happen to anybody.
VISITOR: Do you have any particular saint that you especially admire?
BURKE: I like St. Joseph, because he's the patron saint of hard workers, and I'm a hard worker.
VISITOR: Do you think that the Church is doing enough to educate people about Down syndrome?
BURKE: Well, I like the idea that they have both altar boys and altar girls with Down syndrome. I think that the Church does reach out to us and gives us a chance to be able to serve in a house that is really God's house. There are people who are blind, and there are people who are crippled, but God is always telling us that miracles can happen in our lives. He's giving us a chance to be out in the world and do things for ourselves and make better things happen.
VISITOR: How important has your family been for you?
BURKE: Oh, very important. From the moment I was born, and while I was growing up, they always encouraged me, had me think things through and put me in the right direction. Besides my parents, I also have two sisters, Ellen and Anne, and a brother, J.R. I'm the youngest.
VISITOR: Do you have any special motto that you follow in life?
BURKE: On my bedroom wall, I framed something that I always liked. It says, "Obstacles are what you see when you take your eye off the goal." I like it because it reminds me that dreams can come true.
VISITOR: Do you ever feel that God has treated you unfairly?
BURKE: No. I actually feel that I have been blessed with God's expectations of me–just to be able to have dreams about doing certain things in life, and then doing them.
VISITOR: Are there any new things coming up for you in television or in entertainment in general?
BURKE: In April, I was in a television program called "The Division" on the Lifetime network. And then our band, Chris Burke with Joe and John DeMasi, is coming out with our fourth record album. The songs are both inspirational and rock 'n' roll.
VISITOR: Are you going to Tennessee in July for the annual National Down Syndrome Society Conference?
BURKE: Of course. I'll be doing some workshops in which I'll be encouraging some of those with Down syndrome to think about writing and doing other creative things.
VISITOR: Do you have any special role models in your life?
BURKE: My family, and also some of my relatives and friends. I also like a lot of actors in the television industry. One of them is Ron Howard. He's always doing different things, whether it's acting, writing or directing, and that's what I like to do. He's always using his imagination, and that's so important. I've met him, but I've never stayed in touch. He's much too busy for that.
I'm hoping to do some work on a documentary that would be based on my book, "A Special Kind of Hero" (iUniverse, $17), about my parents and my life. But I don't want other writers and producers improvising about my life, so this is going to be a documentary. I'm very strict and firm about that. I want the documentary to be very truthful and natural.
VISITOR: When you talk to groups in which all the people there have Down syndrome, what do you tell them?
BURKE: Just to give it one more shot and try to make a difference in life by doing different things in their lives.
I like to think of myself as someone who is able. I feel I am differently able from other people but still very able to do a lot of things that others can do.
VISITOR: As a role model yourself to a lot of people, what would you want them to learn from your life?
BURKE: To believe in themselves, to work hard and never give up. Life is not about money. It's really about trying to be an extraordinary person doing extraordinary things.
VISITOR: Years from now, how would you want to be remembered?
BURKE: As someone who was involved in a lot of things, especially in entertainment. And I'd like to be remembered as someone who had a wonderful life. That's it. Otherwise, I'm like anybody else.
Ryan (oursunvis@osv.com) writes from New York. For information on purchasing records by Chris Burke with Joe and John DeMasi, write C.J.J. Enterprises, 566 Wantagh Ave., Levittown, NY 11756, or call (516) 579-7816.
Parenting an Invisible Child by Steve Krausz, (303) 573-8113, E-mail: jcan@qwest.net. Jewish Children's Adoption Network Newsletter, Summer 2001.
People with disabilities often deal with being either stared at or ignored.
Sometimes it feels that our kids with Down syndrome literally can become invisible! One of our local Jewish day school was one of our heroes only last year because it was willing to include kids with special needs in its programs.
One of those kids was our son Rafi, who has Down syndrome. Rafi has been making lots of progress, learning his letters and numbers, learning to add, as well as making friends. Recently, however, some people involved with the school seems to have decided that kids with special needs are too expensive (even though the parents were willing to make a commitment to raise the necessary funds!) and/or they somehow create an image the school is uncomfortable with.
They are discontinuing their "program". They won't even look at our Gavriella who is functioning at grade level, because she has a "label". A second day school in town, as a matter of written policy, won't accept students who are more than 6 months below grade level!! And so, the kids with special needs are going to have to move to the third day school, which was initially reluctant to have these children, but at least agrees that they deserve to have a Jewish education in a Jewish environment!
We are somewhat frustrated and confused. We thought that the Jewish concept was that all people are created in G-d's image, and that the role of a school was to educate all children. We cannot understand a school that segregates or refuses to accept children who need some extra assistance to succeed!
Recently, our Rafi was supposed to receive his siddur (prayerbook) along with the rest of first grade at an assembly. We went all excited to the event, only to have our expectations dashed! While all the other kids had long parts in Hebrew and English, sang, danced, pretended to be butterflies, help up signs with Hebrew letters, lit pretend Shabbat candles, he was on stage - sitting in a chair, not moving, just sitting; and we waited. We figured that the teacher surely planned some little thing for him to do - hold up a sign, say some word like "Shalom" or say a blessing (he can do that!), or take some other kid's hand and step forward, or something, anything! Were we expecting him to recite the Declaration of Independence? Of course not! We know Rafi can't do what "typical" kids can do academically or verbally. We did not expect that after teaching Rafi for two years in a row, his teacher(s) would be so unaware as to not imagine how it feels to simply sit for 30 minutes with no part - the only kid with no part - as if he didn't really exist. He must have become invisible to some people.
So, we hoped we could remind his teachers and his school that Rafi is also created in G-d's image. That seeing Rafi is to see that part of the image of G-d that is kind, loving, endlessly forgiving, enthusiastic, and is happy to see you whether you walk or are in a wheelchair, knows you are a person even if you have Alzheimer's, and is happy to talk to you, doesn't care what race or age you are, and he likes you and includes you in his world. What a lesson in Judaism to learn, and what a missed learning opportunity that night was! The other kids did a yeoman's job memorizing lines in English and Hebrew and performing. Too bad the moral and ethical lessons about kindness to people with challenges and difficulties were missed.
It is so sad to think that a disability renders a child invisible to some people. We hope such things don't happen in your community!
One thing we at the JCAN have certainly noticed over the past eleven years: in communities where children with disabilities are included in the Jewish schools, far fewer children with disabilities are placed for adoption than in those communities where there is stigma attached to these children and they are not included in the Jewish schools!
Follow-up: that article was written in June 2001. the school that reluctantly accepted the kids, once they were there, decided to do things right: they included the kids with special needs in spelling bees (they modified things for them), in school plays and other presentations, and the kids have made friends with lots of "typical" kids in the school.
Doing it right is possible.
Following her heart, Lupita Cano started her own art card business by Susan Phinney, Seattle Post-Intelligence, http://seattlepi.nwsource.com October, 10, 2002. (206) 448-8397 or susanphinney@seattlepi.com. One time use in printed format granted by Karin Kasnoff, KarinKasnoff@seattlepi.com. Copyright 2002, Seattle Post-Intelligencer. Reprinted with permission.
Web Wanderings
New Stanford Center Offers Hope For Down Syndrome Therapies Scientists Receive $2-Million Grant From Hillblom Foundation. URL: http://mednews.stanford.edu/releases/2003/april/down-syndrome.html
Father's Journal
Headwind
And the therapist well pleased with Emmanuel told us that one day my son would learn that he had Down syndrome.
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The center will focus on understanding the biological basis of Down syndrome and developing therapies to reverse or eliminate difficulties with cognition, speech, sleep and late-life decline in neurological function experienced by people with Down syndrome. [...]
Preliminary research [...] suggests that abnormalities in nerve cell structure and signaling mechanism may be responsible for both the initial cognitive difficulties in Down syndrome children and the eventual neurological decline that afflicts affected adults. The scientists envision drug therapies that may enhance signaling capacity in the neurons of people with Down syndrome.