From the Inside Out: Personal Perspectives of Six Georgians on Their Institutional Experiences
| Publication year | 2010 |
Georgia State University Law Review
3-21-2012
From the Inside Out: Personal Perspectives of Six Georgians on Their Institutional Experiences
Daniel Crimmins
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Crimmins, Daniel (2009) "From the Inside Out: Personal Perspectives of Six Georgians on Their Institutional Experiences," Georgia State University Law Review: Vol. 26: Iss. 3, Article 7. Available at: http://digitalarchive.gsu.edu/gsulr/vol26/iss3/7
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FROM THE INSIDE OUT: PERSONAL PERSPECTIVES OF SIX GEORGIANS ON THEIR INSTITUTIONAL EXPERIENCES
Daniel Crimmins, Ph.D.,* Stacey Ramirez,** Bethany Stevens, J.D., M.A.,1 and Jessica Howell, M.P.H.V
The landmark Supreme Court decision Olmstead v. L.C. established that it is a violation of the civil rights of Americans with disabilities to be segregated in institutions if the support and services they require can be appropriately provided in the community.1 For many individuals, Olmstead has been the catalyst for obtaining the support needed to leave institutions and move into the community. Yet a decade later, over two million people who could be served in community settings continue to reside in institutions and nursing facilities in the United States.2 For them, Olmstead is a promise yet to be fulfilled.3
This article presents the narratives of six people with developmental or intellectual disabilities who lived part of their lives in institutions, but have since transitioned into the community. Their stories reveal common themes and experiences of life in an institution, including the abuses they suffered at the hands of "care providers," selected experiences from their new lives, and sage advice to those still awaiting the transition. The narratives offer
* Daniel Crimmins is a Clinical Professor of Public Health and the Director the Center for Leadership in Disability at Georgia State University.
** Stacey Ramirez is the Director of Individual and Family Supports in the Center for Leadership in Disability at Georgia State University
± Bethany Stevens is Clinical Instructor of Public Health and Policy Analyst in the Center for Leadership in Disability.
V Jessica Howell is the Interdisciplinary Training Coordinator and Assistant Director in the Center for Leadership in Disability.
1. Olmstead v. L.C. ex rel. Zimring, 527 U.S. 581, 597,607 (1999).
2. Nat'l Disability Rights Network, A Decade of "Little Progress" Implementing Olmstead: Evaluating Federal Agency Impact After 10 Years, at 4 (2009), available at http://ww.ndm.org/issues/commmt/Decade%20o^
ead%2012%201%20final.pdf.
3. Bazelon Ctr. for Mental Health Law, Still Waiting ... The Unfulfilled Promise of olmstead, at 1 (2009), available at http://www.bazelon.org/pdf/01mstead_Call-to-Action.pdf.
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insight and motivation to those who seek to further the impact of Olmstead in their states.
I. Background for the Interviews
The six key informants reflect a convenience sample of people who identified themselves when several Georgia self-advocacy and disability support organizations were approached. All participants stated that they wanted to share their stories to help others "get out and stay out." The objective for this research was to collect individual narratives as part of the ten-year anniversary of the Olmstead decision. Because the case originated in Georgia, it was particularly relevant to honor the voices of Georgia citizens affected by the Olmstead decision.
As a convenience sample, these individuals should not be taken as reflective of the entire population of people who have transitioned into the community or of those still remaining in institutions. Each narrative is, however, compelling on its own, and among them are many common elements that are likely to be applicable to the broader experience of individuals living in institutions. Five of the six interviews were conducted in the participants' homes. The individuals, who differed in their abilities and disabilities, ranged in age from twenty-four to sixty years. Their length of time in institutional settings ranged from three to thirty-five years. Participants provided informed consent for the interviews and the use of their stories in this paper. Several also gave explicit consent for the use of their real names.
II. Key Informants
Lena is a fifty-three year-old African American woman with a warm, hospitable nature. For the interview, she wore a purple shirt, white pants, and new, purple boots. Purple being her favorite color, she was proud of the rare find of her new boots. Lena was born in Newnan, Georgia where she lived with her family in her grandmother's house. She is the youngest of seven children and
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remains in close contact with two of her sisters. She has mental health issues and a mobility impairment necessitating the use of a scooter.
One of Lena's earliest childhood memories is the pain of leaving her grandmother's home with her two sisters to live with her mother's boyfriend in Alabama. As she reminisced, she painted a picture of a sobbing young child looking out the back window of the car. The image of her grandmother waving goodbye from the front porch slowly faded into the distance.
Lena has been in and out institutions for thirty-five years between the ages of fifteen and fifty. She recalled a story from age fifteen, when she was excited to be travelling "home" with her family to visit her grandmother. Upon the family's arrival, Lena was told the trip was for her grandmother's funeral. Not being able to say goodbye to the one person who loved her caused Lena tremendous grief. Lena explained that this grief and loss drove her to an intentional overdose on drugs. Following this suicide attempt, she was placed in a psychiatric institution, then a series of group homes. Soon after the overdose, she vowed to find purpose in her life and not attempt suicide again.
Today, Lena lives alone in an apartment. Although she has lived in her home for two years, she has yet to completely unpack; this was apparent from her reaching into a box to get plates for dinner with the interviewer. In Lena's kitchen, she has a large refrigerator and freezer so she can store the food she buys in bulk. She said she does not like to go shopping and had not been to the grocery store for four months.
A drawing of Martin Luther King, Jr. by Lois Curtis, one of the plaintiffs in the Olmstead case, is framed and proudly displayed on top of the freezer. Also displayed is one of her most prized possessions—a clock with the ADAPT logo, which features a wheelchair user freeing herself from shackles.4 Lena enjoyed telling the story of how she acquired the clock from Mark Johnson—a local
4. ADAPT is "a national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom." ADAPT, http://www.adapt.org/index.php (last visited Jan. 28, 2010).
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and national leader in ADAPT—at a conference. He offered to pay for the clock, but she refused the charity. He bought the clock anyway, giving it to her with the condition that she should sell four more. She boasted that she went on to sell six!
Glen has kind brown eyes and a warm, welcoming smile. He was born and raised in a tight-knit Jewish family in Atlanta. He is the middle child with two sisters. He has an intellectual disability and a mobility impairment from a surgery that fused his right knee. He now lives in an assisted living facility called Azalea House. At sixty years old, he is the youngest resident in this facility with the majority of the occupants having Alzheimer's disease. For this reason, Glen shared that when he is there he spends most of his time in his bedroom watching TV with the door closed as he feels he has nothing in common with the other residents. Despite having lived there for several years, his bedroom remains rather barren. There are no pictures hanging because he is not sure if he is allowed to hang anything on the wall. His bed is nicely made with an attractive bedspread. On top of his dresser is a small TV located beside the window with closed blinds and no curtains. The only seating in the room is the scooter he uses for mobility and his bed. Azalea House is a congregate living facility with password-coded locks on the front doors. Glen, however, has the codes, which allows him to come and go as he wishes.
Glen has an active life, rich with community service activities. He is a member of the Georgia Council on Developmental Disabilities and on the Board of Directors of People First of Georgia.5 He volunteers at Disability Link, People First of Atlanta, and a self-advocacy program called Voices that Count. Glen was also appointed by the Governor as a member of the Georgia Olmstead Planning Committee. When he is not working as a volunteer, he is often out with friends.
5. See Georgia Council on Developmental Disabilities, http://web.me.com/gcdd/GCDD/Home.html (last visited Feb. 8, 2010); IHDD, Institute on Human Development Disability, http://www.ihdd.uga.edu/DisabilityRightsAdvocacy/People%20First.html (last visited Feb. 8,2010).
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Glen has spent most of his life in residential schools and institutions. His whole appearance and energy level changed as he began to tell about his...
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