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?
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.
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.
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.
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.
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.
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.
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.
