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
A friend of mine asked me what I thought about a residential placement option he saw. He’s thinking of the future for his children with Developmental Disabilities. After a very long-winded response email, I decided “Hey I should put this to perspective to greater use.” How bout a little advice from “the other side.” Honestly, let’s put it out there. Your number one worry is “what will happen to my child with developmental disabilities after I’m gone?” And the follow-up “how can I ensure their safety.” Yeah, many of you talk about big dreams for children but really, in your guts, you think “safety.” ( Some of you, secretly are going one step further and you’re thinking “surrogate.” After all, no one can love them like you do, right? How can you find a place that will care enough?) As a sibling after 15 years I can tell you that I wonder “what if I should die before my brother?” And “how can I ensure his safety?”
From the vantage point of 16 years AD (after death). Knowing what I know now, here’s what I wish I could have told my parents. Mom, Dad, there are certain rules of nature that you simply have to acknowledge. I know it’s hard because of the implications. But they’re real, let’s talk about them.
The rules of nature
- There is no permanency. Whatever solution you find — residential, day program, employment, etc — it cannot be permanent.
- There are no guarantees. However much you plan, the unexpected will emerge.
- Walls do not protect. They hide.
- Even children with the most severe disabilities will have to cut the cord. Ultimately they will leave the nest.
- Risk exists for everyone. There is no way to eliminate all risk for your child. You have to get comfortable that there is a level of risk you must take.
- I am a sibling. Stop worrying about giving me an “obligation” or a “burden.” You have given me a brother. Family takes care of family.
- Given these rules of nature I cannot promise you that I will keep everything just the way you set it up. I’m sorry. I’ll keep it that way as long as possible but then at a certain point I am going to have to make changes. I promise to be mindful of your values and David’s needs and desires.
Given all of the above…. As parents, its expecting to much of yourself to find the “golden solution.” It’s not feasible. So, let’s go with you’re finding the best solution today. What is the most important thing to do? Develop a “circle.” Develop a multi-generational social circle surrounding your child. Ensure that you are not the only person in your child’s life who is not paid to be there.
Take it from me. It took me 15 years to understand this simple point. Inclusion isn’t about a house or a trip to the park. It is not about how many times you “get into” the neighborhood. Its not something I can write 5 goals for on an IDT plan. It simply means that an individual is not alone. That they have their own “community/ies” (friends, family, people with shared interests and goals). These people are not paid to be part of the community. To be disenfranchised? To be on the outside of communities versus on the inside? This is what makes a person invisible. Being invisible makes a person vulnerable.
Surely, as a parent, you can understand this. You’re worried about who could possibly replace you? NO ONE CAN REPLACE YOU. It will take a village of people to care as much as you care. To replace the eyes on the back of your head. The one thing you can do (do early, do often, never stop doing) is build the village. If your child grows up living within the village you build, they will always be a valued member of the community and a derivative fact is they will be less at risk, more fulfilled, and reach their full potential.
What parent wouldn’t want that? Start building now.
When I worked in business, we had these things called “moments of truth” — the moments when the business “touched” the end customer. And that touch — regardless of who did it, told the “truth” about the company. About how they work, what they value, how good their processes are, how flexible they are dealing with problems, etc. These “moments of truth,” through time, meant that a business could be a raging successl or suffer horrible losses because of how in tuned they were with their end customers. As times have changed and we’re now well into the “Information Age,” we have 1000 ways to learn about those we serve and various means to maintain this information over time and build upon it.
“Customer-engagement is critical for the success of an organization and in a knowledge-driven economy, the power of information cannot be underestimated. ” (Fast Company)
“The key to achieving emotive success is understanding the customers’ needs and expectations. By doing so, companies can identify the most important interactions – “the moments of truth” – and prioritize delivery accordingly. The IBM customer experience framework integrates four key dimensions: emotive performance, products and services, tactile performance, and channels and touch points” (IBM)
I’m in a new field, now. A field in support of families and individuals with developmental disabilities. Many in this field are supposed to be “advocates,” who must manage needs and expectations on both sides (individual/system) and must do so with an emotive connectedness. As in business, there are some who are in touch with the individuals that define their work and there are some who are just in touch with their work — the day-to-day tasks without sight of the people they are impacting. There are some who are, unfortunately, removed from the day-to-day lives of these individuals. And then, like customer-service agents and sales people in business, there are some who got too close to the fire for too long and burnt out.
I have the best job in the world. Every single day I have the opportunity to talk to an individual or family member. I do not have the luxury to talk only to the ones I know. Or the ones I like. Or the ones who share my opinions and beliefs. The phone rings, I answer. Someone passes me on the street, I talk to them. We’re hosting listening sessions and I work to get people with various perspectives out to talk. “Let’s hear it, let’s hear what you have to say, what your life is about, and what you’re concerned about.” And these are all moments of truth. Two observations:
- We’ve stopped listening. Just like the political landscape of today, we’ve stopped listening to what people are saying. Instead we paint them in a white hat or a black hat and put them in camps “for” or “against” our perspective. We need to listen. We have got to have meaningful dialogue about difficult topics. In business we say it takes “5-why’s” to get to the root cause of an issue.
- We have a generational divide. The “old-timers” were here in the beginning. Pioneers of the movement. They remember a time when there was nothing. No rights to anything. There are the “new-timers” who know nothing other than having rights. For the new-timers, IDEA has always been around. The old-timers fear that things can go back to the way they were before. The new-timers don’t know there was a “before” — its only theoretical.
Last week I met a guy at the bus stop named “Joe.” He said he was in the Special Olympics and the last soccer game of the season was this weekend. I asked if he was sad the season was over. “Yes, really sad,” but he was smiling. “You don’t look sad,” I said. “Well, that’s because Basketball starts next weekend!”
We continued chatting on the bus ride. Joe lives at home but has a job 5-days a week in food services with the Marines. He goes to the neighborhood diner on Saturday mornings. And in the middle of this conversation he explained that he was very afraid because he has a surgery coming up. He remembers a time when he reacted badly to getting a needle (kicked out) and as a result he was thrown to the ground, face down, with someone sitting on him and forcibly restrained. Hmmm. This conversation had a lot to digest. In one conversation, one person, we were trying to satisfy all levels of Maslow’s hierarchy simultaneously! Psychology, Safety… Self-actualization.
We have to create opportunity for “moments of truth.” We cannot close off perspectives we don’t like. We must continue to talk. We must understand our common grounds. We cannot ever stop listening.
What’s your truth?