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