Making connections with adult siblings of people with disabilities and the people who love them


My brother, Plato, struggles trying to be himself in a world that treats being different as a crime.  My brother likes to look for aluminum cans and loose change that can be found in vacuum cleaners at various car washes. Of course this behavior did not go unnoticed by the police.  Plato recounted the story this way,”A police officer saw me and gave him a ticket for looking for cans on private property (an apartment complex dumpster), one for a broken tail-light, one for making a U turn, and one for being for a public nuisance.”  The police officer then told him never to come back to that area again because he was tired of seeing him in the area.

Plato has been taken to jail several times for public nuisance, etc. My parents have simply gotten tired of the police arresting him so they stopped making bail. There have been occasions when Plato has irritated the life out of the officers so they let him go and the process started all over again. I often laugh at one scenario where the police officers were so frazzled by Plato flushing the toilet over and over again that they just sent him home and dropped the charges. They even sent the city commissioner to my parents’ house to ask my parents, “Why can’t you control him?” It is apparent to me that the police officers really do not understand the mind of an adult with autism. The truth is that my parents gave up a long time ago trying to MAKE Plato do anything.  It is my family’s contention that as long as what Plato is doing is not causing physical harm to him or others then he should be left alone.

The problem is that Plato has been living in the same area for over 30 years. One would think that the police or fire department would have a tag by his name stating that he has autism and a list of the proper steps to take or people to call. We should teach our public servants kindness and how to respond to adults with developmental disabilities so that court systems and tax money is not wasted on silly stuff. I look forward to the day where being different is no longer a crime.

 

Chris’ College Experience

Thanks to Chris Hunnicutt and his son,Chris, for collaborating to share their experiences and ideas. This will be the first in a series of posts about resources for helping families negotiate transitions.

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Our lives together began with knowing before his birth that we were having a child with Down syndrome.  Though Marty and I were initially off put with what this meant for our family within a week we were assured he was meant to be part of our life and we could make the most of it.  By my temperament and training, I began seeking resources and knowledge for helping us to be parents who were ahead of the curve in supporting the possibilities for Chris.  Another component of significance is that Chris has a sister, Carrie, who is seven years older; from his perspective, she hung the moon.  From our perspective, she modeled what possibilities were available to others.

From the early years and up until now, we envisioned Chris would be a part of the typical community.  Whether that was in sports activities, classroom settings, to other general activities, we wanted for him the ordinary and included, rather than segregated and “special”.  So that is what we have sought across all areas.  That said, there have been some barriers but there have also been some wonderful allies and advocates along the way who have been helpful and valuable in the journey.  As a result, Chris has been able to attend camp and work alongside other “Crew” members; he has been a part of missions’ trips to North Carolina and Florida and missions’ projects in Atlanta.  He has trained with others interested in martial arts and attained a” black belt certification”; he has enjoyed many opportunities as he and others considered possibilities and moved toward those even though all the “details” were not necessarily  in place.  We like to think of it as the “dignity of risk”.  Virtually every good thing has difficulties, restarts, then milestones, and progress before realizing the goal.  So vision and goals are the first things, the great news is they can come at any stage of life and build upon the current status.

So when Carrie went to Berry, he naturally saw his journey after high school being to college, he was about 11 at that time.  Years later I knew he was serious when, at a family reunion, he stated to folks who found out he was in high school, “I’m going to Berry College “as his next steps.  At that point there were no colleges in the south that offered inclusive post-secondary education ( IPSE) for persons with intellectual and developmental disabilities ( Pw I/DD).  There were programs in the north east, mid-west and Canada we considered yet those seemed a world away and fiscally unreachable.

Then in 2009 Kennesaw State University announced the Academy for Inclusive Adult Education and we were fortunate that he was accepted into the first cohort there.  He took typical classes with other freshman and began learning of the challenges of college; classes, assignments, becoming a part of campus life getting to class, managing one’s life…you know the drill.  In his second year he lived with a house-mate in an apartment and had to learn getting along, cooking, sharing space and food doing laundry, the things of becoming an independent young adult.  Here again there were fits and starts and life lessons, much as you’d expect with a typical young adult.  And learn he did and he continues learning as he sees where he’s been to where he has come.  For others I would celebrate… there seems to be larger interest in replicating this model round the state.  This may be an initiative you explore for your family member and consider advocating  for on their and others behalf.   I welcome contact to discuss this and next steps if that would be helpful

Chris now knows he can learn, he wants to learn about things that are important to him, and his grand desire for his life and contribution to the world is coming together; to get this…I have to learn and master this.  Let me give him an opportunity to tell you in his own words.  Some editing of his writing is a part of this.

At the point of being asked to blog, I presented these questions to Chris; these are his responses.

  1. What was it that first made you think you wanted to go to college?  I wanted to have full college experience.
  2. What age were you when you first thought about going to college? I wanted to go when I was 22 years old.
  3. What did your family say about you wanting to go to college?  My dad said it was okay for me to go to college.  Yes he had confidence in me and wanted to watch me grow and learn.
  4. Did you get to go…where… when?  This meant so much to me because I was ready.  I went to Kennesaw State University.  To go, I said to myself “this the year to see me and the other students grow”.  How will this impact my life…it helped see everyone was like me.  I was a safe community,  they had a lot of KSU police,if  I needed help then it was there if I needed it
  5. What experiences at college meant the most to you?  (Dad’s writing) Chris had an opportunity to meet and make many friends through campus bible studies, meals in the commons, class interactions and projects.  This built great confidence for him to be able to navigate typical settings, i.e. numerous times he was able to navigate Cobb County Transit ( CCT ) to get back to Decatur to work.
  6. What subjects did you take?  I had so much fun  taking self-defenses class. I took KSU 1101 (“Success as a Student and Citizen”) with Ken Hill. I have taken criminal justice class and music and arts in the community.  “Health and wellness for life” was another class I took.
  7. What did they help you to learn?  It was hard to push forward.  In class with papers and tests, I pushed myself on learning the skills I needed.  These skills will help me when I mature, it was hard but I learned to push forward.
  8. What work would you like to do now?  I want to be in ministry or criminal justice.  I am not certain what that may look like but I want to help people.
  9. How would your vocation (the work you do) help you and others?   I have been working in Kroger for six years.   I have made some great relationship.  With them, both customers and coworkers, I work with to succeed in my job. I work with costumers to make them happy; when I help push carts to their car, I will unload groceries when it is needed, I want to learn new skills at my job.
  10. What additional skills do you need and where could you learn them?  My manager will help me if I am moving to slow; I can count on him to help me when I needed.

So my encouragement to each of you is

  • Imagine the possibilities… it is NOT too late to consider what might be.  Let the PwI/DD be the guide…Seek to understand the “Why” this desire may be important. (Wanting to become a minister may mean a desire to help others and make a contribution.  Chris does have speaking and presentation skills so we’re considering how seminary / biblical knowledge can be enhanced. Who knows!?)
  • Move confidently in the direction of the goal…  Be alert to those who stand in the way, move around them.  Be thankful and develop those relationships that will encourage you and your family member.  Those folks are priceless and may offer insight, ideas and information you may not have known or considered
  • Never give up or give in…The efforts to excel and succeed will mean progress beyond the expected or may mean setting the bar higher to achieve the next phase.
  • Have faith…we will achieve much more by believing in the worth of the efforts.  And what we accomplish will be greater by virtue of the perseverance we apply.
  • Continue looking toward the goal…It is easy to lose sight, and we must continue the trip, all our lives are richer by virtue of the journey.

This all said if I can be a resource to any of you, send me an email, I’ll be glad to help.  That is a part of my life work.                                          gch4faces@bellsouth.net

Transitions are a very important part of life and for most people high school is a very large period of transformation. This is the period of our life that we go from being children to young adults and this transition can affect us thorough our lives.

By the time we, Plato and I, entered high school, Plato was set back a year so now he was in my grade level.  Alabama was going thorough a period of integration and were bussing children to provide diversity in schools.  So, we were bussed to a school far out in the rural part of Alabama called Mary G. Montgomery High School. I had already lived through the title and stigma of being called Plato’s sister in elementary and middle school and saw High School as a chance to overcome the title and start a new. This school did not know about him and I could redefine myself. So, my freshmen year of high school I made it my point to became the best at everything I could participate in at school.  I made the honor roll, became student council president, a student Ambassador to Russia, homecoming queen runner up, and Miss Viking, basically I became an avid over achiever or goody two shoes.  I did all of this just to out shine my brother’s condition. I hate to admit it but I did not tell people he was my brother at first. Now, If they asked me if he was my brother I would say yes but if they were talking about the weird new kid at school I promptly walked away without saying a word. Yes, I am ashamed of this time in my life and I constantly try to atone for it.

During this time, the roles switched and by sophomore year, Plato was now known as Regina’s brother. We did not mind this switch because I was able to throw my will around school and keep older boys from messing with him. I remember being in class and seeing him get cornered in the hallway, and I immediately left my classroom, ran down the hall, and stood between my brother and the boys. I got in their faces and said, “If you touch him, I will get my friends and kick your A@%.” So, my popularity helped and I did not get in trouble from my teacher for leaving the classroom because I was known for being an excellent student.

Getting Plato through high school was a challenge. I had to go to all his teacher’s classes, get his assignments, and relay messages back to my parents. My father even had to finally go and sit in the classroom with him to make sure he focused on his tests to graduate from high school. The sad thing was that we were not able to find a college or secondary school that could house or educate him at the time. He is so incredibly smart but also very independent and will just walk away whenever he feels like it. Most group homes mandated the residents do everything at the same time.

We tried a group home for him but they panicked when he drove off to Wal-Mart to get some items. They finally said that he was just too difficult to participate in their program because he wanted to do things on this own time. I am not sure what is available for young adults with ID/DD now but I would love to see a program that had an apartment complex and housed adults with developmental disabilities in their own individual apartments with a roommate or two around their same level of independence.  I could see a group leader coming in once a day to make sure that ate, took their medication, or got to work. Then they would be free to do what they wanted to on their own time schedule. It would also be nice if a company would employ these individuals, provide transportation to and from work, and give them jobs that match their interest and skill levels.  I would be interested in finding out what is available to adults with DD/IDD now and programs that focus on maximizing their independence.

What have been your experiences with transitions? What has worked and what challenges remain?

Regina’s blog post about her family addressing the sexual expression of her brother Plato provides a useful point to begin a conversation about developmental disability and sexuality. Her post really begs the question: have you or your family members had a conversation with your family member with a developmental disability about sexuality? If not, why not?

I offer a few reasons why most people in the United States, along with other many cultures, experience barriers in talking about sexuality, particularly when addressing the desires/needs of people with disabilities. Additionally, I offer some tools to help build the bridge to having a necessary conversation around sexuality.

Balancing Sexual Messages

Regina starts the blog with the sexcellent quote from Salt N Pepa’s Let’s Talk about Sex – “let’s talk about all the good things and the bad things that may be.” As a sexual health scholar, this line is a revolution in talking about sexuality because it provides a catalyst to talk all the GOOD and the BAD about sexuality – the harmful and the pleasurable. In a culture so saturated with sex negative images of people being ravaged with no discussion about safer sex practices, it is nice to find some balance to these images with discussion about some of the good aspects of sexuality and how to be protected to fully enjoy the experience(s).

In 2001, the 16 Surgeon General of the United States Dr. David Satcher wrote the Call to Action to Promote Sexual Health and Sexually Responsible Behavior to promote conversations throughout the nation about sexual health. He believes conversation in various community and familial spaces is key to promoting sexual health and eliminating health disparities. In the report, Dr. Satcher addresses the disability community by stating: “There are also persons who are challenged with developmental, physical or mental disabilities whose sexuality and sexual needs have often been ignored, or at worst, exploited and abused… Although appropriate assistance has been developed for these vulnerable populations, it is seriously underutilized…Additional materials and programs, as well as further research, are needed.”

Disability & Sexuality

Dr. Satcher touches upon some of the key problems for people with disabilities and sexuality – we are often overly represented in populations experiencing sexual abuse, exploitation and hate crimes. It therefore seems often easier for people who are interested in the well-being of people with disabilities to protect us or keep us away from sexuality. In some cases this idea of protection takes the form of compulsory sterilization, as Regina touched in at the close of her blog post when she wrote: “At one time in this nation’s history certain states sterilized people with developmental disabilities. This action was wrong and robbed many individuals of their reproductive rights.” Certainly true that this practice robs people of their sexual and reproductive rights, it is not sure that these practices have stopped as many scholars contend.

The sterilization of people with disabilities is still constitutional under the United States Supreme Court opinion Buck v. Bell (1927). People with disabilities continue to be sterilized throughout the nation, with the most recent case making national news in the US being the Ashley X case.  Her parents stated they had her breast buds and uterus removed, along with being placed on high levels of estrogen so that she could be kept small and easy to care for, along with being protected  from sexual violence. Factually this is incorrect, as sterilization may ward off unintended pregnancies but CANNOT protect anyone from sexual violence or STDs, including HIV and AIDs.

My post seems to be leading you to the same place you came here with: fear, questions and without a clear path for supporting sexual health for people with disabilities. Below I offer you 6 steps to work on having healthy meaningful conversations about sexuality with your family member with a disability. Simple Googling can answer the question affirmatively: a disability does NOT preclude sexuality – so it is important to be prepared to address this issue when it arises.

Tips to Talk about Sexuality

Step 1: Start by congratulating yourself for getting this, for seeking information and wanting to move forward positively! That is a great start.

Step 2: prepare a bit for some areas that you may be asked about, like anatomy, developmental stages to give information and how to stay calm when delivering information that we have ALL been socialized to be afraid or ashamed to talk about. Some great starting books to learn about sexuality, with disability components, include:

1)      Teaching Children with Down Syndrome about Their Bodies, Boundaries,  and Sexuality

2)      Words Can Work: When Talking with Kids about Sexual Health

3)      Guide to Getting it On

4)      Our Bodies, Ourselves

I have used all of these books in teaching parents of people with disabilities, people with disabilities, and college students (of different abilities) about sexuality. They include little vignettes or stories to help ground the methods in exchanges between people – to model behavior. Those vignettes serves as a great models for role-playing with friends or loved ones, if you feel you need practice before talking to your family member with a disability about sexuality.

Step 3: Consider role-playing or going through a possible conversation that might come up with a family member. Practice using proper medical terms for autonomy so you teach your family members how to properly identify their body parts. Role-playing how to talk about sexuality can be very useful. This is true because you can work out any giggles you might have; you can deal with a “curve ball question” and deal with your reaction without shaming your family member. And it helps your friends or loved ones learn how to talk about sex too!

Step 4: Have a conversation with your family member about sexuality. Ask if they have questions, if they want to talk about any feelings they have about their bodies, relationships, etc.

Step 5: Understand you may not have THE answer to every question. Just admit that you need to look it up and use it as a learning period for both you and your family member. A good teacher knows that s/he does not know all the answers!

Step 6: Keep practicing and keep the door open to other conversations. You can do this simply by saying “if you ever have any questions, you know you can come to your sister, brother or I to talk. We have all had questions, it’s normal and natural. I’m here when you need me.”

Can you see how conversations can spread and help others? Dr. Satcher is right, if we start with conversation – the changes we can make in health and quality of lives for all Americans is priceless.

If you have further questions, please do not hesitate to email me (Bethany Stevens) at bstevens@gsu.edu.

This blog is intended to be a collaborative effort and to that end the next post will be a follow up about issues at the intersection of disability and sexuality. The post will be written by Bethany Stevens, JD, MA.

The idea behind the creation of the blog is that some of the content will  be reflections offered by Plato’s Sister and from time to time those posts will be supplemented by the writing of experts who will offer siblings resources to navigate the too oftern uncharted waters of adult relationships with siblings with disabilities.

If you are curious to know more about Ms. Stevens you can check out her bio on the web site of the Center for Leadership in Disability.Ms. Stevens is the 2011  recipient of the Irving Zola Award for Emerging Scholarship from the Society for Disability Studies.

We are excited to share Bethany’s reflections in this space and also excited to join the conversation her writing will generate.

Let’s Talk About Sex

“Let’s talk about sex, baby. Let’s talk about all the good things and the bad things that may be.” These lyrics by the legendary rap group, Salt –n-Pepa, say it all. Our brothers and sisters with developmental disabilities are adults and engage in adult activities. So, how do we handle this or help them make informed decisions? Well, I do not claim to have the answer to this question but I will share with you how our family handled this situation when it was presented.

When Plato was around 21, he became friends with a young, single mother with two children.  She would often call Plato to come over to her house to baby sit her children, take her to the grocery store, help take the children to the doctor’s office, etc. Well, one day she called him over to her house and when she answered the door. The kids were gone and she came to the door without any clothes on. My brother did not know what to make of this. So, he leaves her standing there naked and heads home. When he gets home he come in the house and asks us, “Why Susan would answer the door without clothes on? What logical reason would lead her to do that? “ We laughed a little under our breath and told him that,” Susan probably wanted to take their relationship to the next level and her answering the door that way was probably her way of seducing him.” We explained to him how to use a condom, to always let the woman make the first move, and to always stop when the woman said “no” or “stop”.

We never knew if Susan gave him a second chance but they remained good friend to this day. Susan moved to the state of Washington but her children, now grown, often call Plato or come to visit him.  Well, so far we have not had to deal with Plato fathering any children or having any sexual transmitted diseases. We did have to deal with prostitutes offering him services but we told him that most women that do that have some type of sexually transmitted disease or that it was a waste of his money.  He has always been good at following directions and hates spending money so I doubt if he has engaged in that type of venture.

At one time in this nation’s history certain states sterilized people with developmental disabilities. This action was wrong and robbed many individuals of their reproductive rights.

Ok, now what about the adult siblings out there? Do you have any suggestions on how to handle this topic?

 

Plato’s Sister

Welcome to the blog called “Plato’s Sister”. The purpose of this blog is to reach out to the adult siblings of individuals with developmental disabilities, build a community where readers can share their hopes and dreams, provide a place to express challenges and concerns facing our siblings, and share information that can help foster transitions from parental care to adult sibling care. We also want to celebrate and discuss the memories that established special sibling bonds and discuss the next steps /new roles in the relationship as caregiver, guardian, and/or advocate with/for our siblings with developmental disabilities.

First of all, I would like to explain why I chose “Plato’s Sister” as the name for the blog. My older brother, Plato, was diagnosed with “classic autism” at the age of four from the T.E.A.C.H. program in North Carolina. We moved from North Carolina to a small town in Alabama when he was seven years old. No one in this town had ever heard of autism and his behavior quickly made him the center of attention from teachers and student at the elementary school we attended. (Now, let me state that this was 40 plus years ago and a lot of people had no idea what “Autism” was or how to treat it, not just this small town.) So, when I started school one year behind him I was immediately called “Plato’s Sister” and that was my name through elementary and middle school. Very few people, outside of my classmates and close friends, even knew my name.

At the age of six, I had to answer questions from adults and students about why Plato behaved the way he did. I also had to help members of the community understand autism better. My brother told me once that, ”Having autism was like being an alien on a strange planet and that whenever you tried to understand the people on this planet it hurt and you had to run back to your on world.” So, this was my answer to question I was often asked.  As a child I hated the label, “ Plato’s Sister” and all the questions that followed. However, as I got older and wiser, I first learned to accept it and now I look back on those times with loving memories.

My life was shaped because of my brother Plato and having him in my life made me a better person. I feel my patience, sense of humor, ability to understand, and my determination was gained from living with a sibling with a developmental disability.  My brother Plato also influenced my view that everyone can learn and has something to offer. When you love someone with a developmental disability your world slows down and you learn to appreciate the small things in life. You gain a perspective that is priceless and that a person is so much more than what you see and hear on the exterior. I am reminded of the words from President Theodore Roosevelt that stated,” For those who fight for it, life has a flavor the privileged will never know.”

I want all the adult siblings of individuals with developmental disabilities that read this blog to share their experiences, give us ideas for topics, and help us advocate for our brothers and sisters.  I want the format of this blog to open with a memory of a situation we faced, followed with how we handled it or should have handle it, and conclude with helpful information. If you have any advice, memories, or questions please feel free to share them on this blog and we will try to help you find the answers, laugh or cry from your memories, and/or celebrate your battles won on the behalf of your sibling.

 

Sincerely,

Plato’s Sister

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