June 2016

Jane,

I was recently interviewed. I dislike almost everything about it from the picture selected to the obvious lack of care and attention to detail a subject of this nature warrants. The interviewer didn't even care enough to get another woman's child's name right. She used my son's name instead and gave a half hearted apology for doing so.

I really want the impact of what we'd gone through during those early stages of seeking a diagnosis to stand out. I wanted people to understand the gravity of the disparity that many black mothers are going through when seeking a diagnosis and services for their child who may have autism. It's not just about getting the wrong diagnosis or being passed from place to place. It's the blatant disregard for what the mother is trying to accomplish. It's about experts who see a child that is clearly autistic and are so willingly to deny the proper diagnosis so he can get much needed services that are unavailable to him otherwise. And last, but not least, the determination to leave a black mother's cry for help unanswered. 

Too much is being left on the cutting room floor. People need to see the ugliness of the REAL fight to get a proper autism diagnosis for a black child. They need to know about the screaming matches between mother and service coordinator when the service coordinator screams that her child will "NEVER" get CAP (a highly coveted Medicaid Waiver Program).

I am tired of white reporters pretending to want to tell our stories, only to flick out a few benign flakes of something slightly interesting so they can claim their place in the mainstream as real pioneers of truth to an audience who could never understand the magnitude of the effects of not being counted among the masses. We are not counted in this land, not even on the disability level. We are nothing to white disability agencies and we will never be anything until we validate ourselves. We are the only ones who can make our stories real.

Please forgive me, but I had to get that out. I would like very much to share my story and have it told by NBDC which is the only entity I know that has the integrity to tell the story right.

Jackie Pilgrim

 

NBDC often receives e-mails from individuals regarding how they or family members are treated during accessing service delivery systems or inquiries about services or interviews about our experiences. Recently, because of the below e-mail NBDC has committed, for documentation purposes, to interview folks on their experiences.

Please keep a look out for the interviews and let us hear from you.

Peace and Blessings.

Jane

_____________________________________________________________________________

Jane,

I was recently interviewed. I dislike almost everything about it from the picture selected to the obvious lack of care and attention to detail a subject of this nature warrants. The interviewer didn't even care enough to get another woman's child's name right. She used my son's name instead and gave a half hearted apology for doing so.

I really want the impact of what we'd gone through during those early stages of seeking a diagnosis to stand out. I wanted people to understand the gravity of the disparity that many black mothers are going through when seeking a diagnosis and services for their child who may have autism. It's not just about getting the wrong diagnosis or being passed from place to place. It's the blatant disregard for what the mother is trying to accomplish. It's about experts who see a child that is clearly autistic and are so willingly to deny the proper diagnosis so he can get much needed services that are unavailable to him otherwise. And last, but not least, the determination to leave a black mother's cry for help unanswered.

 
Too much is being left on the cutting room floor. People need to see the ugliness of the REAL fight to get a proper autism diagnosis for a black child. They need to know about the screaming matches between mother and service coordinator when the service coordinator screams that her child will "NEVER" get CAP (a highly coveted Medicaid Waiver Program).

I am tired of white reporters pretending to want to tell our stories, only to flick out a few benign flakes of something slightly interesting so they can claim their place in the mainstream as real pioneers of truth to an audience who could never understand the magnitude of the effects of not being counted among the masses. We are not counted in this land, not even on the disability level. We are nothing to white disability agencies and we will never be anything until we validate ourselves. We are the only ones who can make our stories real.

An interview with filmmaker, Cleveland Bailey, Jr. on an upcoming feature film about black, disabled civil rights activist George Washington Eames, Jr. in Jim Crow Louisiana.

By Leroy Moore

Cleve Bailey has taken the story of his great uncle and aunt George and Kathy Eames and created a screenplay entitled: A Small Temporary Inconvenience which chronicles the lives of this interracial couple who dedicated their lives to Civil Rights Activism and fighting against racism in the Deep South.

Kathy ...read more

Sunrise: January 17, 1942, Louisville, KY

Sunset: June 3, 2016, Scottsdale, AZ

#CripTheVote is a nonpartisan campaign to engage both voters and politicians in a productive discussion about disability issues in the United States, with the hope that Disability takes on greater prominence within the American political landscape. This is intended as a resource for voters with disabilities to prepare for voting, and learn more about the 2016 General Election on Tuesday, November 8.

http://disabilitythinking.com/election-2016-cripthevote