Roots and Fences: A Generational Story of Friends, Family and Disability - Interview with Author Sharon Gregory Duncan

 

Photograph: Courtesy of Cynthia Kristufek

Dr. Sharon Gregory Duncan is a doer. Sharon has always been a doer. I love doers.  She is a highly accomplished educator and administrator for students with disabilities. She provides training to schools and agencies in Illinois and Indiana in the areas of family support, goal writing and curriculum implementation. She is also the founder and director of Abide in Me, a charitable organization that provides assistance to individuals with disabilities for leading engaged lives. 

She completed her doctoral work at National Louis University, Chicago, in the Disability and Equity in Education Program. She is a professor at Purdue Calumet University teaching graduate courses in the Intensive Licensure Special Education teacher preparation program. 

She is the mother of three adult children and she has three grandchildren. Sharon and her husband Dave have been married for 35 years. They enjoy travel and hanging out with their dog, Nellie. They are Chicago White Sox fans (a common bond) and they have been season ticket holders for many years. They are close with family and they are fortunate to have made some good and lifelong friendships.  

Her first published book is Roots and Fences: A Generational Story of Friends, Family and Disability.   

J: Your Aunt Jackie's story will stick with me for some time. A friend of mine who works closely with Down Syndrome Research informed me a few months ago that the Down gene is closely linked to both Alzheimer's and Parkinson's disease. I was intrigued by that information, since my father died of Alzheimer's. That was the first time I heard about the Down gene and the link to dementia. How long has the medical community known about this link?  

S: The link between the two is not completely understood and the science is relatively new. Medical researchers and practitioners believe that it does have something to do with the extra copy of chromosome 21. The extra copy increases the production of amyloid beta which accumulates in the brain and causes loss of brain cells (neurons). This seems to occur earlier for individuals with Down syndrome possibly, because of the chromosomal issues. (When someone has Alzheimer's disease the same process occurs.)  Since people with Down syndrome are no longer institutionalized they are living longer and we are seeing people with DS with brain degeneration. Jackie initially was given a life expectancy of 12 years and then they upped her life expectancy to 32 years. She lived until her late fifties. Initial symptoms of Alzheimer's for individuals with Down Syndrome are first seen around age 50. It occurs three to five times in greater numbers than in the general population. Sometimes it is hard to detect Alzheimer’s with people who have a low level of cognition. The question becomes is it Alzheimer's or part of their intellectual disability? My aunt Jackie was very talkative and was intellectually aware, so it was pretty clear to see the symptoms after a year or two with her dementia.

The current research indicates that in the Down Syndrome population from the time of diagnosis to death (with dementia) is typically about nine years. My aunt lived seven years after her diagnosis. The brain is complicated and there is still so much to learn. The Down syndrome clinics, one which is at Lutheran General Hospital are constantly looking at the impact of Alzheimer’s for individuals with Down syndrome and the impact on their lives and the lives of their family members.

J:  It's not that long ago that society used the term "retarded" and no one thought much about it. The stigma of the word today is strong. Now, I hear the word and I'm repulsed when someone uses it. Psychologically, why is it that many people are still uncomfortable being around or with the disabled?

S: Well “retarded” means slow; not good enough; not complete; dumb. I certainly would not appreciate being called or thought of as slow all my life. Individuals with disabilities themselves are telling us they hate the word. There is a whole movement to stamp out the “R” word. People with intellectual disabilities find it demeaning and marginalizing. They want to be known by name, to be thought of as a full person.  The correct term is intellectual disability, but even government used the word retarded until very recently. 

As far as being uncomfortable. Stigma has long been associated with having a child with a disability. Up until just recently, society thought someone ( usually the mother) must have done something wrong to have a child with a disability. Many people are uncomfortable with anything they do not understand. Some people with disabilities can look a bit scary to people who do not live or work with them.  People with disabilities may come with all kinds of equipment: helmets for protecting the brain when having a seizure, standers for stretching, motorized chairs for mobility, communication devices etc...  Some folks with disabilities may have unusual behaviors, they may make sounds, they may drool, etc... I talk a great deal with parents of people with disabilities to empower their loved one. I encourage them to  offer choices to their loved one and encourage dressing, acting and engaging in activities that their typical peers would be involved with. I get on my soap box when I see adults dressed in immature clothing, playing with toys, being offered books like “Hop on Pop” and watching Barney just because they have intellectual disabilities. I find that so disrespectful. The more people with any type of disability are valued and included as true participating members of society, people will be more comfortable.

J: The two versions of your Aunt Jackie? The life she displayed before adults and the one with children. That intrigued me. What is the phenomena behind the two personas? 

S: I personally never thought about it until I started writing and thinking deeply about her life situation, and like you I found it very interesting. These are some of my thoughts on this, but the truth is probably only known to Jackie. How I wish she was still alive and able to talk with me. She did take many things literally because she did not always “get” it. So she would figure it out as well as she could.....like literally tossing the salad. She was also raised to be very obedient. She was raised in the 1940’s. My grandmother always said “children should be seen and not heard.” My grandmother could just give you the look and you would not cross her.Jackie was always in the obedient child mode with her mom, so I think she had to really concentrate to be the person she was expected to be. When she was around kids I think she was her best self, she could let her guard down, just relax and have fun.  We as young children never told her what to do, because we just enjoyed her fun spirit. Jackie was genuine, funny, talkative, liked to play games, tell jokes, dance and sing. She could respond to emergencies appropriately and spoke so clearly we had no clue she was disabled. I know it sounds crazy that we did not see her as disabled, but we did not. Jackie thrived with kids. She knew we loved her. She knew her parents loved her.

J: Literally? You mentioned that and I thought of my dad.  After he was diagnosed with Alzheimer's he was very literal. If you asked him how he slept - he would say, with my eyes closed. Explain that with disabled people?

S: Literal. I have had much experience with that working with students with learning differences.  Some people with brains that I like to say are “wired differently” are very literal. We also see that with people that are OCD, Autistic, have Alzheimer's etc..., because their brains do not for some reason analyze or synthesize as well. Everything is cut and dry, because they cannot see the big picture. Predictable schedules are so important to relieve their stress. I look at Blooms Taxonomy and the so called stages of intellect. The first level is “remembering,” so we see people who can follow directions.

J: Mongoloid idiot? It's distressing to think the medical community reacted that way not that long ago. What was the single biggest change and when did that change take place in the science and medicine

S: When I look back it is is hard to think that we called my friend, Chuck “Mongoloid” when we were kids. That was the term used in the 60’s for people with what we now call Down syndrome. While Dr. John Down first described the condition in 1866, there was still much misinformation, confusion and and blame associated with this through the 1970’s. Mongoloid was used as a physical descriptor, because the physical attributes , almond shaped eyes, facial features etc... were attributed to a specific Asian population. The suffix  “oid" means resembles Mongoloid means “resembling Mongols.” Mongoloid is now considered derogatory, because it is a term related to racial classification.

Idiot was the accepted medical term used to describe people with low IQ’s in the 1930s when Jackie was born, so she was classified as a “Mongoloid Idiot.” When Chuck was born in the 1960s Mongoloid was still used, but idiot was dropped. If you were Mongoloid it was also assumed you were retarded, because Mental Retardation was the term used to describe individuals with low IQs in the 1960s. So much occurred because of lack of understanding. The chromosome disorder was not officially uncovered by the medical community until 1961. When Chuck was born there was not a clear understanding of this recently uncovered syndrome.

J: It was a strange coincidence that your closest childhood friends also had family members who were mentally disabled. What a strong bond. Discuss the differences in the lives of Chuck, Jonathon and Jamee?

S: Chuck, Jonathon and Jamee are so representative of the disability movement in the United States. Neither they nor their parents realized it, since they were going about their lives the best they could. The sixties were thought of as the parent involvement era of disability in the US. Special education laws were not even written when Chuck first started school. Most kids with Down syndrome were in institutions or living at home doing nothing. Chuck’s parents wanted more for their child and they knew he was capable of something. I do not even know if they were sure of what he was capable of, just that he could do things and they wanted him to have schooling or training..something, because he deserved it.  As parents they did whatever was necessary for their son. Jonathon was sent from the hospital after being born to die in the comfort of his home. He did not die and began to thrive. His parents knew he deserved more and did whatever was necessary to get medical, therapeutic and educational support. Jamee was supposedly fine when she was born, but her mom especially saw she was behind developmentally and had terrible issues with eating issues and painful reflux.  Jonathon and Jamee were born in the era of disability inclusion and their parents  philosophically longed for inclusion for their children. I was so struck by the spirit of the four mothers, their compassion, advocacy, common sense. I feel so fortunate and blessed really to be the one who wove the connections together and am able to share their stories.

J: I loved the story you told about driving through your old neighborhood and seeing the tree. I went past my old house and they removed the most beautiful Blue Spruce that I planted as a 16 year old.  I was shocked and almost hurt. Who rips up a tree that beautiful? What are your most memorable childhood experiences?

S: One editor told me “Sounds like you grew up in a fairytale.”  He was being sarcastic, but in some regards it really was very once upon a time-ish. It was not perfect. I was a big crybaby and had this bright red hair and freckles so I heard about that from the neighborhood kids. Name calling was a big deal in those days, but I had a very carefree childhood. Little things made us happy like watching The Wizard of Oz in color for the first time on our new console TV. We all played together in the neighborhood. There were at least 30 kids on our two blocks. We played baseball in the prairie (an empty lot), ice skated at Oak Lawn Lake. Everyone stayed out in summer until the street lights went on. We took the bus all the way to Ford City by ourselves at nine years old. My backyard seemed so big and our tree was home to forts, a place to hang mom’s clothes line and somewhere to have picnics under. The world was safe, all we needed was a dime to use the pay phone in case we needed to call home when we were out and about. I am still friends with Laura and Debbie, so I think there is something to be said about those first relationships formed in the place where your life began. 

J: A friend of mine working with the DSRTF said one of her most powerful influences was seeing how strong the mothers of the Down children were when they walked into Soldier Field early on during the Special Olympics and hardly anyone was there. She said it made her stronger knowing of the changes. 

S: I am so impressed by the moms in my book as well and most of the moms of children with disabilities that I have met in my career. They go about their lives doing what they need to do. They do not want accolades or praise. They just want what all moms want for their children. They want their child to be happy. These moms must be resilient, strong, scheduled, compassionate and almost always on their guard to get what their children need.  Most of the advocacy and inclusive programs were started by mothers. 

J: Tell us about Abide In Me? How did it start? What can people do to assist?  

S: I have always wanted to do something bigger or different to advocate for and/or support people with disabilities. Even though I loved being a special educator and I see myself first and foremost a teacher I felt I should do something more; and I did not know what it was. Those feelings of wanting to do more led me to going to school so many years past my undergraduate degree. I kept going to school working on my school administration courses and ultimately and eventually to my doctorate in Disability Studies. On the occasion of my 25th wedding anniversary, I started a non- profit in Illinois, Abide in Me with the idea I would start a program to help those in need. Initially I used personal funds, but within the last few years Abide in Me became a recognized non for profit 501c3 organization. We have a full board of directors and last year sponsored a fund raiser, 'Celebrate Me Home!”  to raise money for the down payment, and constructual adaptations for a neighborhood home in the Oak Lawn community for five women with disabilities. Garden Center Services will manage and own the home. Our mission is: To support people with disabilities to live active and engaged lives. We have worked with families of children with disabilities in the Dominican Republic, donated art supplies at an art gallery for people with disabilities, started a coffee clutch program, donated furniture and materials to special education school groups to name a few of our projects. We have matched volunteers to organizations and I personally provide advocacy support free of charge through the charity. Our website is abideinme.org. We have a Facebook page as well. People can email me with ideas or programs to support individuals with disabilities of all ages, which can be presented to our board. There are also opportunities for specific volunteering opportunities. If you cook, sew, decorate, love music, sports, have a great idea or just like hanging out with people with disabilities we can match you to people who need your support .

J: You are a Professor at Purdue University? What is the most significant change in education from when you started teaching until the present time?

S: I started out in special ed elementary classrooms in the early 1980’s. I think the most significant change is in technology. I could not even type when I started teaching. We still had purple ditto masters! With all the technology available now it is very exciting both for me and for the accessibility it provides for people of all ability levels. I also think expectations are higher for all individuals with disabilities.We now know they can learn and our job as educators is to find the means so everyone can learn. I love the idea of Universal Design for Learning. We still have a long way to go to have equitable quality programs for students with disabilities ,especially those with significant or multiple disabilities, but I am happy to see and hear a more inclusive philosophy that certainly was not around when I started. On a negative note some of the mandates and paperwork required is sucking the joy from some of our best teachers, but that would be a whole ‘nother interview.' I love teaching. It is who I am.

J: Sharon, I know you and your family love to travel, so on a completely different note what is your favorite vacation destination? Favorite city outside of Chicago?

S: I love different places for different reasons. One of our best trips was to Ghent, Belgium and Amsterdam. My husband and I had such fun exploring and sitting outside the cafes people watching. Visiting Anne Frank’s secret annex had a profound impact on me.  We travel to Fort Myers, Florida, Fountain Hills, Arizona and Cancun, Mexico annually. I love them all for different reasons, but mostly the relaxation afforded me when I get away. I truly love Chicago and think it is the best city ever. There is something about our lake shore that cannot be replicated. Other than Chicago: Rome, San Francisco, New York. I even like Pittsburgh, (never would have thought that) which has a cool downtown with all the sports stadiums.

J: Pittsburgh was just named one of the five best places to retire to in the U.S. I was surprised when I read it and impressed when I finished reading it. What do you do to relax?

S: Relax is a bad word for me. I do not do it well at all. I even tell people when I go places that I do not need to sit, because I do not “sit well.” I received lots of checks for self control during my elementary Catholic school years. I enjoy reading. Typically, I read a book a day, mostly silly romance type things to get my mind tired at night and force me not to think.  Traveling and being physically away is very relaxing for me and I really can chill on vacation.

J: I love to try new restaurants and feel it is one of the best ways to explore any city. Chicago has some superb restaurants. What is your favorite restaurant in Chicago?

S: In the suburbs I enjoy Coopers Hawk and their wine, my favorite location is the one in Burr Ridge. In the city center, I like to go online and find places with views of the city. I look for places with overall great reviews and try them out. I love Petterinos before or after a play. (see review of Petterinos at Chicago and Then Some).  

J: The Chicago White Sox. I have a deep emotional attachment to the team and I know you do as well. What are you hoping for in 2014? 

S: My poor White Sox. 2013 was a depressing season. My love of the Sox has more to do with the memories. My grandpa brought me to many games as a kid and then my dad always organized the family baseball outing. We have been season ticket holders for a bit...love the game! I hope we can pull things together and get some charisma back on the team. Besides playing poorly this year, there was something missing spirit- wise. Hopefully, we can get the bats going next season and have consistent fielding. There were some well pitched games last season, but little bat support. Waiting to see the next group of team leaders emerge.

J: I love Paul Konerko. Not only has he been a superb player for years, but he seemingly has lots of character and integrity, something sadly missing from many athletic competitors today. What makes him so special to the fans?

S: I think part of it is that he is the last one left from our World Series 2005 season. I also think Sox fans expect and respect players who work hard and have team loyalty. We have so few career players these days and Paul is one of those. He also holds many records, because he has been consistent over the years. He developed into a great first baseman. I hope he comes back, but would not want him to go out struggling.

J: Thank you to Sharon for her hard work on behalf of those with disabilities.

Her book, Roots and Fences: A Generational Story of Friends, Family and Disability is published by Outskirts Press. You can purchase a copy at www.amazon.com or through book stores throughout the United States. You can also visit OutskirtsPress.com.  

Photograph: Cynthia Kristufek

Copyright (C) 2013 by Read On Read Now