NOTE EXTRA RESOURCES HAVE BEEN INCLUDED!
Reader warning: if you are not a sibling or family member of an individual with developmental disabilities, stop reading. If you read the word Taboo, and you think “I shouldn’t…” then stop reading. If you see the word SEX and immediately shut your eyes, stop reading. If you are scared of reality and want to pretend it’s not there, stop reading. And if you’re just not ready for this topic, bookmark it… but come back to it.
This is a hard story for me to write but it’s so important, I’m going to share it with you. My brother David was already living in the community (not with my parents). He was home visiting. One Saturday morning I was helping my mother wash David and get him dressed. It was labor intensive. David and I are about the same size. Getting him into the tub and out of the tub is hazardous and my mother was showing me some safety techniques. She was sitting on the toilet and I was on my hands and knees by the tub washing David. My mother said ” you know, whenever you have David, you have to check him.” I thought “what the heck does that mean?” but I said nothing and didn’t even look up at my mother. In my gut I knew this was a conversation I wasn’t ready for. “You’ll have to check him,” she repeated. And then, in gentle detail my mother explained that David was likely to be the victim of all kinds of abuse including molestation and that one of my hardest jobs (among many hard jobs!) would be vigilance on this topic… which would include checking him for all kinds of signs of molestation (delicately, sensitively, and while talking/explaining). UUGH. Talk about a difficult topic to have a) in general b) in such a delicate setting and c) with your mother. We hit the trifecta.
If you are an adult sibling thinking that maybe one day (or maybe that day has already come) you will have primary responsibility (advocacy, care giving, guardianship, etc) for your sibling, then this is a topic you, too, should talk to someone about. It’s “taboo.” Perhaps the biggest taboo there is. We don’t discuss it. If you’re like me, you’d rather go to the dentist than discuss it. Other people don’t want you to discuss it with them. Even still, they are, perhaps, the most important conversations you can have. They are also frightening, freaky and, by instinct, you might want to avoid them all together. Nonetheless, they are absolutely necessary to consider.
- Sexuality. Let’s start more generally with sexuality. Don’t we all hate to talk about the sexuality of a sibling or a parent? It goes into the category of TMI (too much information). However, sexuality is a normal part of human existence. Just because your sibling is an individual with developmental disabilities does not mean that they do not experience sexual urges. Teaching sexuality teaches appropriate behaviors and can also give the individual tools to protect themselves from unwanted sexual advances. Also, I don’t know about you, but I was more likely to discuss sexuality with a sibling than I was to discuss it with a parent! For additional thoughts, here is a workbook on having the conversation. Also, the ARC has produced this position statement on sexuality. Check out the pdf.
- Reproductive Rights. A harder subject. For those of you with sisters and daughters, it is even more difficult. It crosses over between women’s rights and disability rights. A touchy subject full of moral dilemmas. This covers controversial subjects such as sterilization, selective abortion, and genetic testing. This is a totally private issue but one in which the ethics and individual rights absolutely must be considered. You need to have this conversation with yourself before engaging others in the conversation. Read about it. Develop a perspective and why you have your perspective and then engage others in your family in the conversation. Most importantly you must engage the individual in the conversation. Here are some general facts re reproductive rights.
Why have these conversations? Probably more than any other reason, as T’d up at the beginning of this blog, we all should be concerned about SEXUAL ABUSE. Here is a frightening statistic:
- Don’t take all topics (sexuality, reproductive rights, and abuse) at once. This is a difficult arena and can overwhelm you. Even writing this short blog is overwhelming to me :-)!
- Read, read, read. Decide your individual perspective. Understand why you have it. You have a right to your perspective. However, that does not necessarily give you the right to act on your perspective.
- Find someone with whom you can discuss each topic as you choose to undertake it. You are not alone. Use your network. Contact your local protection and advocacy organization (http://www.ndrn.org/).
- Talk to the local University Center of Excellence (UCEDDs). I spoke with Katie Arnold… she reffered me to the Sexuality and Disability Consortium (SDC). SDC has grown as a collaboration of self-advocates, faculty, clinicians, community educators, researchers, and graduate students from the Institute on Disability & Human Development at the University of Illinois at Chicago, Illinois’ University Center of Excellence in Developmental Disabilities. The mission of the SDC is to provide research, advocacy, training and education to support people with disabilities to enhance healthy sexuality and relationships. The SDC’s primary goal is to promote best practice approaches for people with disabilities, families, professionals and policymakers, with a focus on people with I/DD. Their website is http://www.idhd.org/SDC.html
- Contact the Sibling Leadership Network and see if they know of someone in your area or someone online you can talk to.
- This can be uplifting. Sexuality can also be about the power of rich and meaningful relationships. Read this great resource: the IMPACT feature issue on sexuality by the Institute on Community Integration (UCEDD) & Research and Training Center on Community Living at the University of Minnesota. http://ici.umn.edu/products/impact/232/232.pdf. It includes articles by self-advocates, parents, professionals, and lists a lot of good resources.
- As always, knowledge is power. Prevention is a pre-requisite. Vigilance is necessary.
Yours in Community, Kate
Note: This article was originally published on my TypePad site.
(Ad from TV History) In a little row house in Philadelphia, we watched history tick by at the knee of my father. He would bellow, “this is History In The Making, you need to see this.” A pack of 10 children, we piled around a ~14” rabbit-eared Bakelite RCA black and white TV. We were right there as history unfolded. We watched with wonder and amazement – as things that could never happen – happened.
In, 1969, I was 5 years old. I sat piled together with my brothers and sisters to watch Neil Armstrong’s “one small step.” My father, a boisterous man known to talk to the television, watched in awed silence. The Eagle had landed! Who thought we could put a man on the moon?! Days later, my father was singing along with Dorris Day: “Que Sera Sera” and turned to me suddenly and asked “what do you want to be?” “I don’t know, Daddy, what should I be?” He replied “President of the United States!” He sat me down and told me about the greatest President we had. Someone named Kennedy. The one who started the race to the moon. The one who had said “Ask not what your country can do for you…” and acknowledged the need for equality. And if that boy could be president then by God, his own daughter sure could too! *I* could make history?!
That same year, my oldest brother joined the marines and shipped off to some place called Viet Nam. Television in the early 70’s defined my life. After all, my family spent 6+ hours a day for the next couple years looking at little boy soldier faces, searching to find my brother in the crowd. We watched the morning news, the afternoon news, the evening news and the nightly news. My father would lean forward in his chair, his chin jutted forward in a stern setting. His eyes squinting. After the news he’d wipe his hand over his eyes and sigh. Who thought he’d see more little boys go to war.
I was ~10 years old in 1973. A big year as I learned new words like “impeachment” and “Watergate,” which I naively thought was a “water gate.” Watching TV, I learned that power corrupts and saw the downfall of President who’s self-declared that he was NOT a criminal. During the evening news, my dad shouted at Nixon telling him about his oath of presidency, his honor, and the honor of the country. Then he dropped his chin to his chest and shook his head in disgust. Our president impeached?!
My father was Polish Catholic (and, of course, so were we). He was a first generation American. Many of my siblings, now married and with children, started considering themselves Italian from their husband’s side of the family. Back in the day we had a saying. If something was obvious, we’d say “Is the Pope Italian?” In 1978, I watched smoke the smoke change on TV. Black smoke. Black smoke. Black smoke. White smoke! My father explained that the college of cardinals came to a decision and the new Pope was, of all possible things, Polish. My father shouted at the television, pumping his fit in the air. Hoorah! A Polish Pope!
Older, on my own, I moved to California after graduating from college. It was 1986. I was 22 years old, an adult, and on my own. I was living in a hotel and daily watched TV with breakfast. Over Frosted Flakes and toast, I looked up at the TV the moment the Challenger exploded. I called home to my dad. We talked about it. Not just the explosion but goodness, a woman astronaut! My father reminded me that “History tells us that all things are possible.” He asked me to reconsider my career… it wasn’t too late, was I sure I didn’t want to be president?
In 1989 my father turned 77 years old. I happened to be back east for a business trip. The most amazing thing happened while we watched TV. We saw the fall of the Berlin wall. The end to the Cold War! My father explained in detail the building of the wall, the split in Germany, the nuclear policies of Ronald Regan. As the crowds broke through the wall, a gasp left his lungs and my father was propelled backward in his chair. “Now, I’ve seen everything.” (photo from TIME)
I moved back east in the early 90’s. Visited my parents monthly or quarterly. And in 1991, I happened to be sitting next to my father as America announced we were going to war. The Gulf War. Who knew a war could be so brief. For a couple months, my father and I talked together about the world and war. We also talked about technology, my specialty. Desert Storm was a feat of technology. My father reached over and put his hand on my cheek and patted it. “Well, even though you’re not president, I’m proud of you.”
At the time, I didn’t know that this would be the last time we watched “History in the Making” together. He died in 1994. After my father passed away I continued to be there, glued to the TV, anytime something historic showed up.
I was living in Paris in 2001 when my oldest sister, IM’d me…TURN ON THE TV NOW … and I switched on the TV just in time to watch a plane collide with Tower 2. My godson, who is her son, lived in an apartment in the next block. Hours trickled past as we watched TV together, IM’d and waited to hear if he was safe (he was). Over the next days, my friends in France asked why I appeared to be grieving as my family was safe. I said, “You don’t understand. That moment was historic. My country has just irrevocably changed.”
Mere months ago I watched the Inauguration of President Barack H. Obama on a 52” flat-screen TV mounted in a conference room in an office. The screen was meant for teleconferences and made you feel like you were in a meeting with the people on the screen. I rounded up people saying, “whatever side of this you are on, you really need to come see history in the making.”
August 2009, here I sit again. I am clinging to the TV. Stuck in another moment of history in the making. The door to the Kennedy era has been swinging shut for the last decade or so. Jacqueline Kennedy, Eunice Kennedy-Shriver, and Teddy Kennedy. I felt more impacted by this last historic moment than any of the others. This one hit home. I felt close to the Kennedy’s, though I never met them. We, Polish-Cathloic. They, Irish Catholic. We, originally 11 children. They, 9 children. A bunch, a clan. We, with David and Walter– brothers with disabilities. They with Rosemary–a sister with disabilities who ended up institutionalized. Our families both had suffered tragedies, lost battles, siblings, and parents. Suffered yet kept going forward, fighting harder, and never giving up. My father, Phil, used to motivate us with “llegitimum non carborundum.” I am certain that their father, Joe, had shared that expression too. In the same decade both our families became activists–fighting for equality for the under-privileged, the overlooked, the pushed aside. Teddy Kennedy represented my life history, all 45 years of it, both personal and societal.
A “moment in history” defines that distinguishable chasm between then and now. It may be decades in the making. There is, however, a pivot point when the doors of the past close and the future stands on the other side. Not here yet. Sometimes we stand on that precipice overcome by the sadness of what we’ve lost. Other times we stand in awe and in hope of what might be. Today I am sad. Tomorrow I will march toward hope.
You know what I learned from the Kennedy’s?
We are in charge of the history that is made.
What will your legacy be?