Institutionalized Children: Not Home, a Documentary by Narcel Reedus

Leroy - Posted on 05 September 2012

Leroy Moore


Leroy Moore:  As a Black disabled activist and researcher of disabled and Black cultural, art, film, music in history to the present, I haven’t had many experiences finding Black non-disabled who have done film on topics focusing on people with disabilities.  So I was excited to hear about your documentary, Not Home.  What is your involvement in disability community?


Narcel Reedus:  I first got involved with the disability community in 1996 when I was commissioned to direct and produce the short documentary Waddie Welcome. Waddie Welcome was a Black man born on the 4th of July in 1917 in Savannah, GA with Cerebral Palsy. He predated the diagnosis and ended up outliving everyone in his family: mother, father, sisters, brothers, aunts, and uncles… This documentary is about a community coming together to help Waddie Welcome move out of nursing home and back to the community where he was raised.  I also worked as a mental health advocated for two years at the Georgia Advocacy Office in Atlanta. Right in the midst of working at GAO the Olmstead Supreme Court decision came down and I traveled with Lois Curtis, Elaine Wilson and Sue Jamieson to DC.  So that is my foundation in the disability community.


Leroy Moore:  As a Black man do you see the difference on how Black families with disabled children are treated compare to their White counterparts?  If you have explain.


Narcel Reedus:  Well, I worked on Not Home: A documentary about kids living in nursing facilities for about three years. We travelled to seven states and interviewed about 80 people for the documentary. So I can honestly say that I’ve seen poor Black folks struggling and poor White folks struggling for help. I’ve also seen the middle class struggle and in some respects even folks with access to more wealth struggle with the system.  I’ve seen first hand a Black woman in rural Georgia trying to navigate the system for support for her son. Her story is featured in the documentary. So in terms of the obstacles and hardship trying to raise a child with a disability we chose to show the struggle of a Black woman in rural Georgia. In a strange way I think that the disability community has an opportunity to bring folks together across racial and social economic lines.


Leroy Moore:  What is the reaction toward your documentary from the Black community and Black media?


Narcel Reedus:  The community response to Not Home has been great. We had good turnouts in Chicago, Virginia Beach and Norfolk. And really great panel discussions with the community. I’ve had a lot parents and activists come up to me after seeing the film and thank me for showing an aspect of the issue of institutionalizing kids with a developmental disability in a way that has not been shown before.  In terms of the media, we are at the very beginning of this phase of distributing the film. So we have very little press to speak of. But our strategic plan is to make the issue of institutionalizing kids with a developmental disability a national issue that should be address on a national level. We certainly need more press coverage on the film but more importantly on the issue.


Leroy Moore:  As a film maker what do you think the film/media industry need to learn about working with people with disabilities or having a disability theme in their movies/journalist pieces?


Narcel Reedus:  I think their needs to be a massive people first language initiative in journalism. I cringe every time I hear a journalist put a person’s disability ahead of the person. I also think that as media makers we are slowly moving to a place where a person with a disability can be in a film or TV show as a person, a character and not really explain or make an issue of their disability. We are only one or two breakout films away from turning the corner on mainstreaming representation.


Leroy Moore:  Many people, parents, media experts and others only see disability as social services and laws and don’t see the rich history and cultural side of it.  In your work have you looked through the angle of disability cultural, art and history?


 Narcel Reedus:  Honestly, this is where I need more work. I think we’ve all been indoctrinated to see a person’s disability first and then adjusting our perspective to that of pity and compassion. The future of the disability community educates the world on the contributions of the past and present in terms of art and politics. I think you are certainly a part of that future, Leroy, and that’s why we need, more than ever, to see and hear your work and your perspective as a representative of your community.

Leroy Moore:  In the trailer of Not Home, I noticed that there are a lot of mothers speaking their stories.  Have you interview fathers especially Black fathers?


Narcel Reedus:  We did spend some time with a father who is a single parent raising two children, one having a developmental disability. He talks about divorce and that is a bit uncommon: the father staying and the mother leaving. That’s why we have him in the film. We did interview one or two Black fathers but unfortunately they did not make it into the final cut of the film. I think there is more than enough room out here for a documentary about Black fathers and the disability community.


Leroy Moore:  How many disabled activists have you interviewed for your documentary and how many are Black or people of color?


Narcel Reedus:  We interviewed about 80 people for the Not Home documentary. We amassed about 250 hours worth of footage over three years. The challenge of course was wading through all of that footage to find the right sound bite and the right b-roll to effectively tell a story (not the story) but a story. Our goal was to tell one single story but I saw four amazing stories in our footage. Two of these stories involve Black families and two are from the perspective of White families. My goal was not to meet a benchmark of White vs. Black disability activist but to try to tell a compelling, poetic and truthful story. I feel confident that we did just that.


Leroy Moore:  My parents in the early 70’s with many other Black parents fought so hard to get services from disability organizations and now being involved with National Black Disability Coalition, NBDC we see the same story.  NBDC and I are so excited to now about your film but we also see that there needs to be more disability education from Black cultural viewpoint.  What do you think about that?  NBDC & I hope we can stay in contact to work together to make this a reality.


Narcel Reedus: I would love the support of the National Black Disability Coalition. I think just as the Not Home documentary will bring awareness to the issue of the institutionalization of kids with a developmental disability I think there needs to be more market specific media around the issue of Black folks in the disability community. Not everything has to be a documentary, mind you; I’m talking books, plays, TV shows, poetry, dance, novels, films, and music... I think the notion of reaching a target market has changed and is changing. In some respects it is a bit easier to surgically select a portion of the long tail and create a product specifically designed for that market segment. This is the future of communication and marketing. I’m trying to understand it and use it.


Leroy Moore:  How did you do your outreach for the film?  Black disabled people have a high rate of unemployment and living in poverty.  I also write for Poor Magazine and started one of the fist columns on race, poverty and disability.  I also know that there are a lot of homeless families with disabled sons and daughters.  What can families who are living in poverty take away from this documentary?


Narcel Reedus:  Our outreach campaign is designed to reach out to disability rights organizations such as ADAPT, CILs, DD Councils, P&As, the Arcs… and from there connect to parents, activists and elected officials. I think the message of this film is that there is hope and that it takes faith. No doubt kids living in nursing facilities is not a happy subject. That being said, we are not expecting your average Joe to go run out and see Not Home or but the DVD. Most people are unaware of the subject matter. But we designed this film to educate and inspire. We tried to make our third act very emotional and impactful. (Spoiler Alert).


At the end of the Not Home we introduce Qualeigh's: a little boy with a developmental disability who lived the first six years of his life in a long-term pediatric care facility in Norfolk, VA. He had never been outside, never felt a breeze on his face, never rode in a car, or played on a playground. Then one day Michelle Martin was hired as the teacher for his second floor ward. She said she fell in love with him immediately - the "nasty little boy" with mucous all over his face. She spent extra time with Qualeigh, washed his clothes, bought him toys and visited him on her off days along with her husband and two children. The administration reprimanded her. They told her to stop paying extra care and attention to Qualeigh. Michelle Martins quit her job. She told them "In a year's time Qualeigh will be living with me and nobody can tell me what I can and can not do with Qualeigh." She wanted to move Qualeigh out of the facility but didn't know how to do it. So she put her dilemma on the prayer list at her church.

Attorney Sheila Drucker was in the process of removing the parental rights of Qualeigh's siblings from his biological mother.  Almost by accident she discovered Qualeigh living in a long-term pediatric care facility.  What happened next was a series of anonymous phone calls and cryptic emails that eventually connected the woman who genuinely loved Qualeigh and wanted to get him out of the facility with an attorney who would become his Guardian ad Litem and could recommend to the court where he should live.

Today, Qualeigh lives with Michelle Martins and her family. He attends church, goes to school, swims in the pool and enjoys a life once deemed impossible for a child with a severe developmental disability.  This is an incredible story with a happy ending. It was important for us to end Not Home with hope, faith and inspiration.


Leroy Moore:  I do what is known as Krip-Hop Nation, an international network of disabled musicians for social justice and regaining our history in music.  Is there a soundtrack for Not Home?


Narcel Reedus:  We have some really nice music from Atlanta writer, composer and musician Ryan Almario. We talked about a sound track but with so many other aspects of the film to deal with we did not move forward with that idea. I still think it’s possible to make the music from the film available on our website.


Leroy Moore:  It seems to me that you films have a social justice slant to them.  How do you pick out subjects for your film projects?


Narcel Reedus:  I made a decision a long time ago to go down this path of filmmaking; not so much to make disability rights films or only films with a social justice slant to them, but to make films that represent my community. I figured there were plenty of people making gangsta and sexually exploitative films. I certainly could have made more money in Hollywood as that kind of filmmaker but making films that speak to a more realistic and diverse aspect of the Black community and not just the worst or the most violent aspect of the Black community feels more honest; it doesn’t pay as well but it is certainly more honest.


 Leroy Moore: I just saw your, Race Juice, film very powerful. Please explain this film for us.


Narcel Reedus:  Race Juice: An Elixir for the Soul is a short film about a little White girl who accuses her parents of being racist. She lists all her observations that support this accusation. Her parents listen, nod and then force her to drink Race Juice, a concoction that helps her deal with White privilege comfortably; at least with out the annoying side effects of guilt. I actually wrote a feature script for Race Juice and it’s on my todo list of films to make.


Leroy Moore:  When is Not Home going to be in the San Francisco Bay Area and other places?


Narcel Reedus:  The Not Home DVD and companion book is currently available for sale on our website:  We sold an exhibition copy of Not Home to the Center for Independent Living in Berkeley. We are working out some audio descriptor details but we hope to arrange a screening of Not Home in the SF Bay Area before the end of the year. We are very excited about the screening Not Home in the Bay Area. You all have a very strong disability rights community. We see the Not Home documentary as a way to galvanize a community around an issue.


Leroy Moore:  What are your next projects?


Narcel Reedus:  I am currently developing a feature script about a Black father and his relationship with his children. I need to find the room in my creative space to develop the next project while still moving my current project along its path.


Leroy Moore:  How can people reach you and read more about Not Home?


Narcel Reedus:    You can find out more about Not Home: A documentary about kids living in nursing facilities by visiting our website:


Leroy Moore:  Any last words?


Narcel Reedus:  I truly thank you for reaching out to me and giving me this opportunity to talk about my film Not Home. Thank you so much and I look forward to staying connected to you in the future.

I have forwarded info on this article to Stacey Milbern who is involved with the Olmstead Project at Center for Independent Living, Berkeley, CA. Jim Gonsalves and I are also involved in the Olmstead project which is involved with helping people with disabilities get out of nursing homes and institutions.


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