Story Archives 2013

Doctor you say yes, I say no

By Tony Robles

It is sad to feel insignificant. To not be wanted, especially when you are awaiting a service—such as that of healthcare—is akin to arriving at an airport after a long flight and disboarding to find that there is no one to meet you. It's a feeling of isolation. That's not to say that everyone has someone to meet them upon arrival or that they even have the privilege of flying to begin with. But to arrive at the airport and not have someone greet you when you expect it leaves one a bit empty, even if your ride was stuck in traffic through no fault of their own. It is, in a word, anticlimactic.

Such is the feeling I had when I lost my job and slipped into MediCal. I was never a fan of the doctor's office. The glare emanating from the walls and floors seemed to hum a piped-in, subliminal message of inferiority--namely mine—and that it was mandated that I be thankful for the feeling. I had lost my job under very chickenshit circumstances that I could only describe as penurious (for details, see POOR Magazine article, “The Presidio Landmark, Occupied by the 1%"). It seemed the day after I was let go, I got a letter in the mail from my former bosses in their ubiquitous offices in the philanthropy capital known as Cleveland. I thought i'd have a few days—a little wiggle room to get a teeth cleaning and maybe a new pair of glasses—severance for a year and a half of selfless and equanimous service in my duties as doorman to those richer than I—who happened to be anybody that walked through the door. Wrong. I was shown the door—scuffed eyeglasses, plaque stained teeth and all.

I applied for and got on MediCal. I had lost my coverage and ran out of medication at the same time. I needed a refill. I got a refill at Tom Wadell clinic. When I ran out, I had received my MediCal card with the name of a doctor—let's call him Doctor Ngo (pronounced “no” for those who don't know).  I had gone to UCSF urgent care thinking I could get a refill there but was informed that they couldn't help me. “Ngo”...or, “No”, they said. I had to go to the Doctor on my card. So I made the trek to his small office in the Richmond District.

When I arrived I felt I had landed in a doctor's office from the 70's—the early 70's. And judging by the condition of the floors, walls, and windows, it is quite possible that the last time the office had been cleaned was in that particular decade. I looked around for a rotary telephone when my eyes landed on the face of an irritated looking woman in the reception area behind a desk.  She looked like a perpetually pissed off aunt--always pissed off at you for reasons you nor anybody else will ever know. In back of her were medical files that sagged against the wall, large stacks of paper that looked like they'd collapse with a sneeze or if a fly touched down on them.

I took about 15 minutes trying to answer her two questions: 1) Who are you? And 2) Who sent you? She didn't seem to comprehend that Medical had assigned me to her office, that Doctor Ngo was now my doctor. She asked me several times if I had a primary care doctor and I answered Ngo, I mean, “No” several times. Then she told me there was no room for me there, that the doctor had too many patients. She told me to go back to the Tom Wadell Clinic and I responded that they would only send me back to her smiling face.

So reluctantly, she gave me a health history chart to fill out. I sat filling it out when the door opened. In walked a man in a robe, pajamas and leather slippers that slapped the linoleum. The health questionnaire asked the standard health history questions but also asked what my sexual preference was,  if I had sex with my wife and if I enjoyed sex with my wife. As I was filling out the form, the woman was on the phone trying to pawn me off to another clinic. All I needed was a prescription refill, not a colonoscopy.  She hung up the phone and led the man in the robe to a room.  Meanwhile  I completed the form and waited.

15 minutes later I was approached by a kindly looking older man in white. He greeted me and I followed him into the exam room that was a little bigger than a walk-in closet. He told me to sit on the table with the wax tissue covering while he tended to something else. I looked at the implements and various scopes and stainless steel—that were stained—tools of the trade. The ear scope appeared to have dried wax at the end from ears gone by. The other implements looked like they hadn't been sterilized.

He returned and did the usual—blood pressure check, breathe in, breathe out, open wide, etc. He jotted things on a chart. I looked at the wall. His degree hung in the still air. The degree was for something called “Medical Ambassador”. Maybe that was another term for doctor. The degree looked like it had been xeroxed by one of those copy machines you'd find in safeway or wallgreens. He took my weight and said that at 5 foot 9 inches and 182 pounds, I was obese. He showed me a body mass index from some university (I think it was Stamford...that place of higher learning in Connecticut) to back the claim. Dr. Ngo was Vietnamese. I Didn't see myself as obese. Perhaps if I were Vietnamese, I would have. To get to his suggested weight of 160, i'd have to go on a serious diet. I'd go from obese to emaciated. He finally finished and wrote me a prescription with one refill.

The doctor was nice enough. He was far more pleasant than his assistant. As nice as he was, I left with the feeling i'd been pawned off to a doctor that perhaps shouldn't be practicing. The run around I got in getting this level of care, in a neighborhood—i might add—that I grew up in, left me feeling sorry for the next person who had to visit this doctor—and heaven help them if they have some kind of serious condition. I thanked the doctor and wondered if all those files stacked high at the medical reception desk had fallen as I shut the door.

(Graphic from biowizardry.blogspot.com)

Krip-Hop Nation (KHN)  I just read about you through Divas With Disabilities Project.  Tell us about your connection to that project.

Kebra Moore: Divas with Disabilities is an outstanding organization. We share the common bond of being beautiful, educated women with disabilities that display a "Can Do" attitude towards anything we put our minds to.

KHN:  You sing more than Gospel tell us about your music and this new single.  Explain the title of your upcoming album, “Under the Influence,”.

Kebra Moore: I obtained my BA degree from Claflin University in Music Education. This opportunity allowed me to display my talent of singing in a variety of genres like Opera, Jazz, R&B and Gospel. I began singing gospel exclusively in 2007 when I gave my life back to Christ.  I love to sing other genres as well but it has been mostly Gospel as of late.

The "Under the Influence" album has the combination twist of all four types of genres present with a little hip-hop flavor as well. Like my last album, "Kingdom Understanding" it has something for everyone to relate to. This album is an empowerment, no longer succumbing to society views of what beauty is or allowing society to place limits upon what you can or cannot accomplish.

KHN:  You have this great campaign called Beautiful tell us more.

Kebra Moore: The Beautiful Campaign primary goal is to educate people on the endless possibilities that are available to those who have recently suffered life-altering injuries; as well as restore a sense of pride and self-esteem. Throughout the United States, I personally visit spinal cord injury hospitals, rehabilitation centers and disability expos to enlighten and uplift all with physical disabilities. Upon arriving at these facilities, we host concerts, seminars and patient spa like treatments that focuses on ability not disability. This uplifting experience brings a sense of hope and newfound inner peace that assist in recovery.

 KHN: I read on your website that your songs titled “He’ll Make a Way” was featured on President Barack Obama’s documentary soundtrack BECOMING BARACK: Evolution of a Leader.  Tell us about that project.

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 Kebra Moore: The documentary was the beginning years of the President while he was still the Illinois senator. I was contacted through my distribution company MDI to have a song of mine placed on the soundtrack.   I wrote and recorded the song "He'll Make a Way" and submitted it. A few weeks later, I was contacted stating the song had made the cut and it would be placed on the "The Evolutions of a Leader" soundtrack. This was really a huge blessing for me in my music career. Not in a million years I could have imagine writing a song for President Barack Obama.  I hope that one day I get the opportunity to sing it live for him.

 KHN:  Do you think Gospel is more open to musicians with disabilities compare to Hip-Hop & R&B?

Kebra Moore: Yes, in my opinion, the Gospel community appears to be more accepting of those with disabilities. However, great music is acceptable to any genre; you have Ray Charles, Stevie Wonder as testimony. Many artists with disabilities within the Hip Hop and R&B community, but their disability is not as visible as mines' or those mentioned.

KHN:  Do you see other women with physical disabilities in your work?

Kebra Moore: Yes, I encounter other women and men with disabilities in my line of work.  It is very uplifting to see those with disabilities working alongside of those that are able bodied. It erases a negative image of disability or rid misconceptions about those who have disabilities

KHN:  In your video “Beautiful”  I like that you left the viewer with a big wow at the end.  Will you do more music videos?

Kebra Moore: Yes, I am scheduled to film the video to my next single "Never Let Him Go" in June 2013. I am excited about the video, if you think "Beautiful" had a wow factor. Just wait until you see this video! It's going to set the bar quite high for all genres.

KHN:  Many people who become physically disabled later in life have a thinking that they be cure or want to “overcome” their disability.  What are your thoughts about that?

Kebra Moore: It takes time to mentally heal from life altering injuries.  I say that because I have come to accept who I am in life and my disability. Initially the shock factor affects everyone around you and the reality that medicine and technology has not evolved enough to cure you. If not for my disability, I do not know where my life would be right now. It does not define who you are; it only allows you to be easily picked out in a crowd of people. (LOL)

KHN:  You say you’re a speaker.  What do you speak about and being Black and disabled what is your advise to young Black young women with disabilities?

Kebra Moore: Majority of my speaking engagements are about raising self-esteem and being comfortable with you. I would tell any woman, regardless of color, "that life is precious and do not allow society to make you feel inferior or self conscience about who you are. Put God first and focus on your new abilities."

KHN:  I just listen to the single Trouble, POWERFUL. Tell us about the story behind that song.

Kebra Moore: That song hit home and was special to me because growing up I saw how my own mother struggled to raise my brother and I. I have crossed paths with many people of different lifestyles who had a story of their own struggles, and decided to write about it. Troubles don't escape anyone! You have to place your faith in God and let it go. Often time people focus on how big their problem is vice how big their God is.

KHN:  What is on your calendar for this year?

Kebra Moore: Wow, non-stop. I am part of the abilities expo, so I travel and perform as part of the event segment of the expo. In addition, I recently won Ms. Wheelchair Mississippi and I will be working with Mississippi legislative to make the state more ADA friendly. Along with being a full time mother and wife. So my schedule is quite intense now.

March 30: Ms. Wheelchair Alabama Pageant, Birmingham, AL

May 3-5: (Ability Expo) New York

June 8-9 (Video Shoot) "Never Let Him Go", Los Angeles, CA

June 21-22:  Mega Disability Conference (Ms. Wheelchair Mississippi) Jackson, MS

June 28-30 (Ability Expo) Chicago, IL

July 6: Speaking Panel (Essence Festival) New Orleans, LA

July 10-14 (Delta Sigma Theta National Conference) Washington, D.C.

July 15-21 (Ms. Wheelchair America National Conference) Houston, TX

August 2-4 (Ability Expo) Houston, TX

October 5 (Black Essence Awards) Nominee, Bend, IN

More to come!!!!

KHN:  How can people follow your work?

Kebra Moore: www.kebramoore.net

https://www.facebook.com/KebraMooreFocusingOnAbility?ref=hl

https://twitter.com/Kebra_Moore

https://www.facebook.com/KebraMusiq

Krip-Hop Nation:  Lets get this out of the way.  Yes you are my girlfriend so I wanted to interview because of your deep relationship with disability and your musical talents and of course our relationship.  It all well 99.9% involves disability with other factors.  Please explain.

Darla Lennox:  My life since childhood has been centered on disability since my parents are both deaf and being the oldest, I learned advocacy from a young age. From growing up in a deaf and hearing culture, I just felt it was a natural fit for me to work with persons with disabilities—physical disabilities and developmental disabilities, which I did in various group homes and sheltered workshops. Then in 2000, my son, Daniel, was diagnosed with autism and it was also at this time I made the decision to leave group home work for good and go back to school to major in social work with the primary goal being, I didn’t want other families to go through what we (me and my ex-husband) went through which is when you get the diagnosis of autism, there is no handbook or guide, there’s a lot of well meaning advice and a lot of “You should do this and you should do that”, of what you should do next. It’s been a lot of learning along the way with Daniel, what works and doesn’t work for him, a lot of reading and connecting with other parents who are also raising a child with autism. You know when Daniel was diagnosed, a family member said, “God chose you special and knew you could raise a child with autism since you worked with disabilities.” I am a spiritual person but I don’t feel God chose me special, it just happened and if I didn’t raise Daniel, who would? You do what any parent does, you raise your child the best you know how with lots of love, faith, patience, hope, and a good sense of humor! I do think because I worked with persons with disabilities, when the diagnosis was made, I kind of already knew this was where it was heading and just resolved to learn what I could about autism. Yes, I had so many questions and I reached out to one of my aunts who also had and lost a child with a disability, for answers, for support and guidance. She was and still continues to be a support for me.  Whew, did this answer the question? You know I could go on and on. mso-char-type:symbol;mso-symbol-font-family:Symbol">J

KHN:  Please please give us your side of the story how we met.

Darla Lennox:  I’ve got a big ol’ smile thinking about it. We met through my ex-husband, Correy, back in 2006 when he went to Berkeley to interview you for his documentary on the historical treatment of persons with disabilities (which has not been made yet but really needs to be because the time is WAY overdue for this story!). He mentioned to you that I had been working in the field of disabilities for a long time and that I also couldn’t stand the “r” word, which his documentary also focused on—its overuse in popular media. We began emailing each other every so often over the years when your nephews were born , you sent me an email telling me you were an uncle again and you would pop up on Facebook chat to say hi and give your best to my family. I would listen to your radio show and being on Texas time, when I tuned in, it was some lady talking about vegetarian treats!  It really wasn’t until the summer of 2009 after I had already separated from my ex that I shared that news with you. Something in me told me, “Tell him, you know you want to get to know him better.” So I did and we began having long Internet conversations and we didn’t talk on the phone till about 2 months later. I don’t know why we didn’t talk on the phone sooner!  What started out as a huge respect for your work, poetry, and radio shows turned into friendship and then turned into love.  We just connected and found out that we had a lot in common. Me reaching out to you that summer of 2009 was the best thing I could have done because I found and fell in love with my soulmate.

KHN:  You tried out for the X Factor.  Tell us about that experience and your long history of singing.

Darla Lennox: The X Factor is about the image. Yeah, they’ll tell you there is no age limit but as I stood in line in Dallas waiting for my turn to sing, the man in front of me, who was in his mid-40’s and had a great rock voice, was told, “You’re not what we’re looking for.” I was told the same thing after 2 days of standing in long lines hearing Adele’s “Rolling In the Deep” over and over again and people trying to sing like Mariah Carey.  I sang “Get Here” by Oleta Adams, my signature tune and turned on my charm but it wasn’t enough. So back home I went. It was a great learning experience of what these talent shows are looking for and how hungry people are when it comes to singing and sharing their gift with the world. That’s how I feel. I love to sing and I’m not interested in becoming the next Adele and filling stadiums. I would be content to sing in a little smoky jazz club with a cello player and piano behind me while I connect with the people sitting close by. I’ve been singing since the age of 7-8 when I, along with my childhood friend, Laura, would sing the Bee Gees in her basement for her family. Never mind the fact that we didn’t know all the words to “Tragedy” just the chorus, but they sat there and smiled and clapped. I joined choir in the 8 ^{color:black">th} color:black"> grade and continued to be in a choir until I graduated community college in 1991. In between singing in choirs, I also sang at weddings, some talent shows at the fair, a gay bar, and Jewish temple for Rosh Hashanah and Yom Kippur. I loved singing Hebrew at the Jewish Temple because the words and notes just seemed to float and when I hit that last note, it was so quiet you could hear a pin drop.  It was the most wonderful feeling and afterwards having women who travelled from Florida (I was living in Michigan at the time) tell me that they come every year to hear me sing (I sang 2 years straight for the holidays) was truly humbling. This is why I love to sing, why I want to sing-to make that connection with people and move them to feel things in their heart whether it be happiness or sadness.

KHN:  As a working class mother tell us how do you fit your singing into you life and what is in your future when it comes to your singing?

Darla Lennox:  I haven’t been able (yet) to fit singing into my life at this moment as I’m trying to resolve some sleep and anxiety issues for my son but decided the best thing I can do to get myself out there is try open mic. I’ve done karaoke and enjoy it but with open mic, anything goes and while I don’t play an instrument, I hope someone will give me a chance just to open up my mouth and sing. I’ve been going back and forth deciding whether or not I would like to try out for The Voice. I’m a fan and love the fact that they really are just listening to your voice and it would be amazing to have coaching from any of the artists on the show to become an even better singer. I’m not a perfect singer by any means but it would be great to get coaching on singing songs out of my comfort zone (which is typically ballads-r&b, old school soul—aka Anita Baker, Aretha Franklin, Etta James, Nina Simone).  And the exposure would be wonderful too. I’ll keep everyone posted!

KHN:  Your son, Daniel has autism, as an advocate tell us what do you think about this public awareness about people who are autistic and gives some example what is happening locally for your teenage son.

Darla Lennox: As you know April is Autism Awareness Month and people are aware of autism because it happens in 1 out of every 88 children, but now I have read that the CDC (Centers for Disease Control) is now saying that autism is being diagnosed in 1 out of every 50 children. Autism has been at the forefront of the news for quite a while now and I’m all for awareness but what we need, as families of persons with autism, is acceptance for our loved ones! I support Autism Society of America because they really work hard to get more resources for families with autism and they do it in a way that is respectful and appreciates people with autism as they are (at least this is my opinion). And I know I’m gonna get some flack for this but I’m not a huge fan of Autism Speaks because the commercials play the melodramatic music that autism is a horrible tragedy and that children with autism do not like hugs, do not smile, etc. My son is very affectionate, smiles, laughs, and hugs. There was a video, oh I want to say 3-4 years ago, that they put out where they were talking to families of children with autism and one person talked about wanting to strap herself and her son with autism in a car and driving off a bridge.  This is extremely troubling and you have seen the numerous stories in the news about children and adults with not only autism but other disabilities being killed or hurt by their loved ones. Stories like this can be avoided with ACCEPTANCE of autism, ACCEPTANCE of disability as a natural part of life! One person with autism is just that, one person. My son is not “Rainman”, he cannot tell you how many toothpicks you’ve dropped on the floor. He is not able to talk but it doesn’t mean he doesn’t have something or nothing to say. And while he has some behaviors (such as the not sleeping) that are stressful, I love him as he is.  What’s happening locally? Well, there is an autism support group where I live but I stopped attending after the first meeting when I realized I was the only one with a teenage son with autism and the rest had really young children who were repeating what they were hearing  and one parent said, they wish their child wouldn’t talk so much. I just shook my head thinking, “I would love for my son to talk so much, to say anything” and just felt a disconnect. There are many services for children with autism when they’re young but they’re practically non-existent the older they get, particularly when they are teenagers.  Puberty is hard enough but when you add autism to the mix, it can be a trying time for the teenager and the family.  This lack of services for teens with autism isn’t just an issue here, it’s an issue everywhere.

KHN:  You also have a daughter, Ana, that is not disabled, tell us as brother and sister growing up together what was like as a mother making sure that both got enough attention from you and realizing that Daniel would get more attention.

Darla Lennox: Anna’s father and I always made sure as the kids were growing up that we took the time to have a mommy/daughter or daddy/daughter night to get her out of the house and have some fun because she wasn’t just a sister, she was also a third caretaker of Daniel. People ask me if Anna will take care of Daniel after me or Correy are gone and I say no and they are surprised. Anna has been a 3^rd parent of Daniel all her life, she deserves to have her own life outside of her brother and it’s up to us as his parents to make sure we have people we trust to take care of Daniel’s long term needs after we’re gone.

KHN:  You grew up with Deaf parents tell us is there a community/organizations for children of Deaf parents and was there pressure on you as a hearing child at that time?

Darla Lennox:  Yes, I am known as a CODA (Child of Deaf Adult) and there is a CODA organization where they have yearly conferences across the United States and the world where CODAs get together to meet and share their experiences of growing up with deaf parents. I went to one conference in 2010 and it was a wonderful experience that opened up a lot of memories for me. My brother and sister also went with me and it was wonderful having that time to bond and share our memories with other CODAs.  The CODA conference is one place where you can be you and people understand if you break out into signing as you talk because it’s just a natural part of you. Yes, there was a lot of pressure on me growing up as the oldest child of deaf parents because at that time, there was no videophone to make phone calls to businesses, there was no relay yet, there was the oldest child making the phone calls to the electric company or the car loan place on “hey the bill will be late this month” or interpreting doctor visits with the parents. I didn’t question why I had to make the phone calls or interpret, I just did it because they were my parents and I wanted to make sure that whoever they needed to talk to understood that they were deaf and that I would be interpreting the conversation for them.

KHN:  On a relationship tip:  As a White non-disabled woman going out with a Black disabled man give us what kind of reactions you got from being in public with me.

Darla Lennox: Oh man, that look when we are walking down the street and you put your hand on my shoulder for support, it’s the “oh she must be his caretaker” look. Or that time we took the bus to Golden Gate Park and there were no more seats so you sat while I stood and held the strap and you were rubbing my thigh and this older lady just stared us down especially when I leaned over and kissed you. Yet she didn’t bat an eye when a couple sitting right next to her were on each other’s lap! I’m going to kiss you on the city bus, in a restaurant, or as we’re walking down a street and I don’t care who looks!

KHN: What kind of insights you have witness from going out with a Black disabled man?

Darla Lennox: That I’m still learning about aging and disability and I see it when you’ve walked too much in a day, your hips start hurting, especially your lower back and I saw this for myself one visit when we spent the day in San Francisco to see Candy Kane at Biscuit N Blues. The next day we got together with your sister, Melissa and the boys at the park and it took you a little longer walking back to the bus stop afterwards. That evening I just massaged your hips and lower back the best I could so that you weren’t in so much pain and we just chilled at home the next day.

KHN:  What does the world needs to know about dating a person with a developmental disability and what are the general assumptions in the general public about intimate relationships when it comes to non-disabled dating a person with a disability?

Darla Lennox: The world needs to know that just because someone has a developmental disability or any other type of disability doesn’t mean that they don’t want a relationship and it certainly doesn’t mean they can’t have one either.  This is my first time being in a relationship with a disabled man and what I’ve found is you gotta be honest and ask questions if you don’t know, particularly when it comes to getting intimate. You can’t act like the disability isn’t there because it is and while one sexual position may not work (yes, I said it “sexual position”) because it doesn’t feel right physically, there are others that may and you go for it! Touch itself can happen in a variety of ways and as long as you are both open and honest with each other about what you do or don’t like, its all good.  And on that note, don’t underestimate the power of a good phone sex call!

KHN:  What are your thoughts about marriage and the state knowing the fight for people who are LGBTQ and the penalties against people with disabilities if they get marry.

Darla Lennox: I don’t think the state or anyone has any business dictating whom people can and cannot marry whether it be man/man or woman/woman. How does one gay marriage affect a heterosexual couple’s marriage? It doesn’t! People need love and they should love whom they want to love. Now as far as people with disabilities getting penalized for getting married? That’s a load of bullshit because people with disabilities who get SSI or SSDI need it to pay for their housing, meals, transportation, clothing, etc. and to say “Well if you marry your disabled or non disabled partner, you will lose your check”.  It’s rare for anyone to be able to live on one income in a relationship, not to say it can’t be done but with things being as high as they are these days, a couple needs their income. People with disabilities want marriage just as much as gays/lesbians do, to have their relationships recognized and be given the same rights as nondisabled married persons: the right to visit their husband/wife in the hospital, to be added onto their insurance policy, etc.

KHN:  Is it true that mothers who have children with disabilities are nine times out of ten are their full time advocate even in a marriage?

Darla Lennox: I would say more times than not, this is true not to downplay the role of fathers because there are many fathers who do so much for their children. I know for myself, there could be 2-3 adults in the room who can give Daniel a hand but he always comes to me to help him. Mom is who more children with disabilities gravitate to, mom is the one who keeps the records of doctor visits, who knows what the child can or cannot have as far as allergies go, and who the child will go to when they are sick and tired.

color:black">KHN:   color:black">You’ve been writing lyrics to your own songs.  How many songs have you written and what subjects you write about?

Darla Lennox: I would say it’s about 30-32 songs I’ve written and many of my songs are about love, falling in love (gee, I wonder who the inspiration was for those songs?) finding strength in yourself and finding yourself again, having faith when life gets you down, and the power of sisterhood.

KHN:  You have sing at weddings and other events.  Where else do you want to sing and where do you want to take your singing talent?

Darla Lennox: See earlier question—jazz clubs and The Voice!

KHN:  Who are your top three singers and why?

Darla Lennox: 3?? Really Leroy, like I can limit this to 3 singers?! 1. Tie between Nina Simone-because of her politics, her artistry, and amazing voice and Aretha Franklin because she is the reason why I wanted to sing and her powerful voice.  2. Stevie Wonder-because no one else can play the harmonica like him, because I love his songs and politics, and if I have to pick a final 3^rd singer, 3. Peter Gabriel because he is an amazing lyricist who knows how to write songs that pull you into the human condition—grief, love, despair, hope, I love his voice and his ongoing work for Amnesty International.

KHN:  You are also a poet.  Do you turn you poems into songs and do you see Poetry and Songs interchangeable?  Share one of your poems/songs with us.

Darla Lennox: Yes, sometimes. I’ve got a poem that is leaning towards a song and it’s about Daniel. I’ve got to get back to it and see where I can go with it.

Okay, here’s a poem that was inspired by my son. I don’t have a title for it.

What is “normal”?

Who decides it?

How is it that you, he, she, society seems to know what it is and compare and

contrast him to it?

Do you think if you look up autism in the dictionary-you will find a picture of my son?

I think not yet loved ones fret when their friends’ young grandchild is twirling in circles in the backyard

“Oh no, the child has autism!”

Taking a simple childhood pleasure and make it clinical slapping the label of autism on it

“Oh of course it’s autism, “normal” children do not spin around.”

‘Can my child catch it?”

“Catch what?” I ask.

“That, that autism thing?” they ask as they look at my child.

“No!” I answer in a defiant, disgusted tone

Thinking to myself, “Damn movie, “Rainman!” makes people ask me stupid questions about my son, “Does he have special skills?”

I say, “Well he seems to know where I hide the Oreos, does that count?”

They shake their heads incredulous at my flip remark

Perhaps I’m not anguished enough

They’re no longer blessing my heart or “blessing his heart”

when I say my son has autism

Damn that Autism Speaks!

They do not speak for me nor my son

Commercials that talk about the warning signs of autism

I understand and can appreciate now

As I did not get these warnings twelve years ago

The diagnosis was autism

but life was not over

as many thought it would be

Yet here I am today

growing disgusted

listening to experts who say a child with autism doesn’t return smiles

Says who?

One child with autism is just that-one child.

My child with autism smiles, he laughs, he loves, he speaks with his eyes

when the words don’t come, he sprints through the house

he shrieks in joy, happiness, frustration and anger

He knows and understands a lot more than people

give him credit for

He can be goofy and he can be a little shit

And it has nothing to do with autism

It is a 15 year old boy named Daniel

who loves Swiss Cake rolls, his mom, dad, and sister, Anna,

to ride on go karts,

and oh yeah, he also has autism.

So again I ask, “What is normal?”

And who are you, he, she, and society to compare my son

To this word, this standard?

Who are you to define my son by this label-“normal”, “autistic”?

His name is Daniel, thank you very much,

and he’s my son.

Darla J. Lennox

KHN:  What is in your future when it comes to your family, career, music and your relationship with Leroy Moore?

Darla Lennox:  For the near future, continuing my work in vocational rehabilitation working with persons who are Deaf and who have Autism find employment that is meaningful and tailored to their needs; getting my daughter through these last couple of months of high school as she graduates in June; getting into some open mics and possibly The Voice, continuing writing and finishing my book about growing up with and around disability and securing a job and resources for Daniel in California so that within the next 2 years, so I can move there and be with Mr. Leroy Moore all the time!

KHN: Tell us a cute thing/and on the other side what piss you off about Leroy

Darla Lennox: A cute thing? Oh the way your voice becomes soft at the end of our nightly calls when you say “Good night”. What pisses me off about Leroy? When you get heavy into your work and projects and forget to give me a call or say hey. I know you’re a hard workingman baby, but dang, throw your girl a bone or better yet a kiss sometimes! 

KHN: Any last words?

mso-fareast-font-family:"Times New Roman";color:black">Darla Lennox: color:black"> Thank you for being who you are and giving recognition to all of the amazing women in your life and in the world for this month. Thank you for interviewing me, I really enjoyed it. Much love baby, always

Lydia Brown Takes Us Around Autistic Community Politically & Culturally

Leroy Moore: Lydia, I saw your powerful video about the resent killings of people who are autistic by love ones and care takers. What has been your work around this issue?

Lydia Brown: Unfortunately, the very people who ought to be most supportive in their lives routinely murder autistic people. This is a common trend across disabled populations and is by no means a unique phenomenon in the autistic community. The video to which you refer was filmed at the Autistic Self Advocacy Network’s second annual vigil in Washington DC, as part of a National Day of Mourning for disabled people murdered by family members or caregivers—this event has been coordinated both years by Zoe Gross. I hope to be able to lend my voice to the fight against such gross injustices against disabled people. If my words or my work or even my very existence might lend credence to the unfortunately radical idea that disabled existence is no less worthwhile or valuable than able-bodied, neurotypical existence, then I may well succeed in some small way in turning the tide against the attitudes that dehumanize us and lead to our murders.

Leroy Moore: Being a person of color is it harder to get your ethnic community around disability issue and have you experience racism in the autistic community?

Lydia Brown: I am in a unique position where I am a transracial adoptee—my parents are white. As a result, I have largely been disconnected from the Asian, Asian-American, and Chinese communities, and find myself at times a stranger everywhere. That said, I have experienced casual racism and micro aggressions in both the autism and autistic communities. For example, discussions about social attitudes toward autistic people or availability of support services frequently center and privilege North American and Western European perspectives while systematically dismissing and de-legitimizing (or else, tokenizing or appropriating) perspectives from communities outside the white North American/Western European experience. Ableism is also frequently compounded by racism and classism that result in public policies on service eligibility and provision that disproportionately deny access to necessary, quality services for autistics of color and poor autistics. Partially as a result of this phenomenon, white, upper-class autistics and their families are much more likely to be able to successfully advocate for necessary services or against unjust actions than poor autistics and autistic of color and their families.

Leroy Moore: You describe yourself as a Radical Leftist please explain.

Lydia Brown: As one of my friends (who identifies as a progressive, liberal Democrat) put it, I apparently make her look conservative. I use the term “radical leftist” to describe myself because it’s about as accurate and descriptive as I can get without resorting to labels associated with particular ideologies that may or may not align with my particular beliefs. My politics are heavily influenced by Marxist pedagogy (though I’m not a Marxist), in that I am concerned with a transformative vision of social justice that moves beyond an upper-class, white, cis-het, liberal politic and toward a pedagogy of unlearning oppression by deconstructing imperialism and postcolonialist social structures and rhetorical constructs. I analyze societal institutions, cultural locations, and social structures in terms of axes and hierarchies of oppressive systems, intersectionalities of oppression and privilege, and identity politics.

Leroy Moore: You work at the Disability Cultural Center at Georgetown University. What has the center done and is doing?

Lydia Brown: The Disability Cultural Center does not exist yet. I am leading the initiative to establish and sustain a Disability Cultural Center on campus. The purpose of a Disability Cultural Center will be to coordinate, sponsor, and fund educational and social programming on disability pride and power, disabled identity and culture, and disability community and history. This fall, we formed a planning committee for the future center comprised of members of the Georgetown University community and stakeholders in the surrounding Washington DC area. Currently, the committee is working to spread awareness of the initiative, garner support from community stakeholders, and write the formal proposal for the establishment of the center.

Leroy Moore: Do you think legislative avenues must solve all of our problems?

Lydia Brown: Certainly not. Legislative advocacy and public policy work are important and have their place, but these are by no means monolithic solutions to systemic problems. In fact, disabled people face many problems for which legislation or policy changes pose no solutions. For example, a state could pass a law regarding hate crimes on the basis of disability (perhaps by enumerating disability status of a victim as an aggravating factor in an offense motivated by hate), but the existence of that law—even if enforced—would not end the epidemic of hate crimes against disabled people. It certainly would do nothing to address the systemic socialized and acculturated ableism that leads to them.

Leroy Moore: What do you think of all of this right and left wing media on this so called high rates of autism and other mainstream media frame around autism?

Lydia Brown: Fear-mongering has always been a common rhetorical tactic in constructing disability as something pitiable, undesirable, and threatening. Sadly, discussion of autism in the mainstream media frequently falls into the same tired tropes. This type of public discourse leads to a callous disregard for the value and dignity of autistic existence that disproportionately funnels millions of dollars into cure-oriented (that is, eugenics) research while severely neglecting research on quality-of-life issues across the lifespan. It would be almost laughable if the same rhetoric didn’t directly contribute to the attitudes that enable judicial officers and the media to justify and excuse the perpetrators of hate crimes against autistic people.

Leroy Moore: Would you ever think about running for political office and do you think a disability activist should run for office?

Lydia Brown: It’s not out of the question, but it’s certainly not an idea to which I’ve given too much thought. As I mentioned earlier, public policy advocacy on issues that impact disabled people is unquestionably important and necessary. Holding elected office could provide a disability activist a robust platform for addressing much-needed policy reform from an insider’s position, though such a decision should be undertaken with consideration to the significant amount of time and effort that must be invested for a successful political campaign, as well as both the potential advantages for and barriers to effecting meaningful change. It’s definitely not a choice for everyone, but yes, we should be able to participate directly in the policy-making process.

Leroy Moore: Do you think people see the cultural, art, advocacy and stories of people with autism?

Lydia Brown: Outside the Autistic community? Generally not. The predominant narrative of the lives of autistic people—when we are the narrators, rather than those around us—is what is known as the self-narrating zoo exhibit. This phrase encapsulates the prevailing notion that the only appropriate and legitimate narrative any autistic person has to share is that individual’s personal and private experiences as an autistic person, and that our theories and musings on politics, identity, culture, philosophy, or policy are inappropriate, unnecessary, or somehow illegitimate. When mainstream media does recognize the advocacy work of actually autistic people, it is usually presented like inspiration porn—a feel-good, human interest story that exploits the trope of disabled people as mentally defective and infantile by portraying anything we do as extraordinarily special and sweet simply because we are disabled. There are a few exceptions to these trends, but unfortunately, they have yet to enter the mainstream. Spaces like the Autism National Committee’s annual conference (AutCom) and the University of New Hampshire’s Autism Summer Institute often provide grounds where autistic people immersed in autistic culture engage with non-autistics genuinely concerned with becoming effective allies. Other spaces where Autistic culture flourishes, like Autreat and many small, private email lists, are largely unacknowledged by the neurotypical majority and provide spaces centered around Autistic people.

Leroy Moore: What are the main campaigns that you see are important to your community?

Lydia Brown: - Ending hate crime
- Ending healthcare discrimination (especially with regard to denial of life-saving treatment)
- Closing institutions and abolishing segregated schools, workplaces, and residences
- Ending abusive practices in educational and treatment settings (including restraint, seclusion, and aversive)
- Developing more equitable policies and practices for equal access and opportunity in housing, education, and employment
- Expanding access to augmentative and alternative communication for both autistic children and adults
- Shifting research dollars toward quality-of-life and lifespan issues

Leroy Moore: Tell us about the work of The Autistic Self Advocacy Network and what are they working on now?

Lydia Brown: This month, ASAN is launching the Autism Acceptance Month website (www.autismacceptancemonth.com) as part of a history of campaigns by autistics and allies to rebrand April from Autism Awareness Month to Autism Acceptance Month. ASAN is also sponsoring the Loud Hands Project (spearheaded by Julia Bascom), which is a transmedia celebration and collection of Autistic culture and community that released its first product, the Loud Hands: Autistic People, Speaking anthology, this past fall. ASAN is also a partner for the new National Center on Leadership for the Employment and Economic Advancement of People with Disabilities (LEAD Center), and will be collaborating with a number of key disability rights and employment organizations to develop resources and provide technical assistance on fully integrating disabled people into the workplace. More recently, ASAN released a policy brief on organ transplant discrimination against disabled people that can be found on the website at www.autisticadvocacy.org. Further information about ASAN’s projects is also posted to the website.

Leroy Moore: Do you think that disability studies do a good job in teaching about people with autism and what they have provided in our communities?

Lydia Brown: When done right. Disability studies courses that actually emphasize and center the perspectives, theories, literature, and histories of disabled people—in this case, autistics—do well in countering ableist structures in academia that typically marginalize those perspectives while privileging able-bodied neurotypicals. Unfortunately, not all disabilities studies courses remember to do this, particularly in regard to autism, and frequently fail to acknowledge the agency, competence, contributions, and relevance of autistic authors, scholars, and theorists.

Leroy Moore: Have you been following police brutality/killings of people with autism?

Lydia Brown: Unfortunately. The area where disability policy intersects with criminal justice policy has long been an interest of mine, and is actually where my own advocacy began. Motivated by a concern for the potential and actual violations of the rights of autistics (and other developmentally disabled people) like me, I wrote legislation in Massachusetts that would mandate training about autism for all law enforcement and corrections officers in the state in 2009 that was filed for the third time this January. As part of my research prior to writing and filing the legislation initially, and as part of my advocacy now, I have been monitoring cases of wrongful confessions, wrongful arrests, police brutality, and police shootings and killings of autistics across the United States. I have a pretty thick binder sitting on my desk where I’ve printed about one-third of the news articles, police reports, and other materials pertaining to these cases. It’s a pretty depressing binder.

Leroy Moore: How can people support your work?

Lydia Brown: - Read writings by autistic people. Loud Hands: Autistic People, Speaking has an excellent collection of the foundational documents of our community as well as some of the best contemporary essays and blog posts as well.
- Take ASAN’s Autism Acceptance Month pledge not to participate in panels, conferences, or other events about autism that exclude autistic people.
- Donate money to organizations that actually represent and support autistic people. (Other than ASAN, the Autism Network International, the Autism Women’s Network, and the Autism National Committee all do good work; the cross-disability organizations TASH, Not Dead Yet, and the National Council for Independent Living are also good places to send money.)
- Find out what the laws are where you live about restraint, seclusion, and aversive. If the laws aren’t strong enough to protect disabled people from these abuses, contact your lawmakers and ask them to propose new laws that will.
- Find your local chapters of disability rights organizations or the nearest ASAN chapter, and ask what you can do to support their projects and campaigns in your own community.

Leroy Moore: What websites and other social networks that have strong politics and culture of people with autism?

Lydia Brown: The Autism Network International has a wonderful website at www.autreat.org, which is also the website for their annual retreat-style conference for the Autistic community. ANI also hosts a list-serv that’s been around since the 1990’s. The archives at http://archives.autistics.org provide an insight into the history and continual development of Autistic culture. ASAN’s website, at www.autisticadvocacy.org, tends to be more politically focused, though Julia Bascom’s Loud Hands Project (an initiative of ASAN) will become an ever-expanding transmedia celebration of Autistic culture.

LM Any last words?

Lydia Brown: Earlier today, medical staff at a hospital attempted to dissuade a prominent disability rights activist who is also Autistic from receiving a routine but life-saving treatment on the basis of disability status. Within the last week, a young man who murdered an autistic, gay acquaintance by dousing him in oil and setting him on fire received an appallingly lenient sentence of three and a half years in prison for the crime. These are both examples of the deadly consequences of ableist attitudes that devalue disabled lives and dehumanize disabled people. The struggle for Autistic rights is part of the struggle for disabled rights, which in turn, is part of the struggle for universal human rights and transformative social justice. For as long as teachers can restrain and seclude, clinicians can shock and traumatize, and family members and caregivers can abuse and murder with impunity, our struggle will not be over.

lydia@autistichoya.com.
Photo from the vigil was taken by Kory Otto-Jacob.

April 3, 2013

“These are our young people, our future African-American leaders, trying to fight to get an education, and this is who they are cutting services to,” said City College of San Francisco Student Body President Shanell Williams about the recent cutting of the GED van service that provided transportation from “The Point” (Hunters Point) to CCSF GED prep classes. “This was a tiny program with a minimal budget that meant so much to the community and is typical of the moves being made by the corporate-funded forces attacking our communities’ schools locally and nationally,” Shanell explained.

As a formerly houseless, very poor single mama whose life was truly saved by the affordable education, support services, free child care and so much more I received at CCSF, I have been terrified to watch the orchestrated and systematic attack on CCSF, one of the largest community colleges in the country with a student body of over 90,000 people, unfold. Like the sudden closure of 52 public schools in Chicago and more across the country, it is an act of violence against our poor and working class communities of color. To me its insidiousness and covert under-handedness feels like 21st century corporate COINTELPRO.

“This is their fault; they over-budgeted.” “They were sloppy with their accounting.” “They need to clean house.” One after the other, editors of small, wannabe corporate news agencies spoke a strangely similar party line in a press briefing I was invited to a couple of months back in the early stages of this corporate coup of City College, when weekly hit pieces would appear in the SF Chronicle. As these corporate media editors, albeit smaller and less influential than the Chronicle, were all saying the same thing I wondered how they were all so bought in. And then I did a little WeSearch (poor people-led, not philanthro-pimp led, research).

Like the Monsanto Protection Act, the support for all of this corporate destruction of our communities’ schools can be traced to as high up as the federal government and multi-million dollar mandates to privatize most of public education. President Obama’s 2009 American Graduation Initiative for community colleges is directly from the corporate playbook. The plan includes such privatizing measures as partnering with industries and for-profit schools, transferring loans to private lenders, and funding based on student progress.

One of the main players in the corporate coup is the Accrediting Commission for Community and Junior Colleges (ACCJC) who out of the blue gave City College an “F” and a deadline of March 15 to correct supposed defects or face closure. With Board of Trustees’ approval, a very corporate interim chancellor, being paid $1,000 a day, took a wrecking ball to CCSF – in the name of “austerity.”

Behind this huge corporate coup is the Illumina Foundation. It was funded by Sally Mae, the student loan and high stakes testing corporation, which, along with 21st century parachute liberal philanthro-pimps, the Bill and Melinda Gates Foundation, “donated” $1.5 million to the WASC (Western Association of Schools and Colleges) or accreditation board so a comprehensive Karl Rove-style campaign of disinformation could be launched against the otherwise stellar and problem-free City College of San Francisco.

Why? Perhaps those 90,000 warm bodies would be generating a lot more profits in tuition and whole more student loan debt if they were enrolled in a private college like Heald, University of Phoenix, DeVry and Pepperdine and/or through the multitude of on-line universities being pushed heavily by the digital sweatshop perpetrators, the Gates Foundation.

And of course these kinds of campaigns work. Or do they? Yes, it’s true that since the disinformation campaign was launched, enrollment in CCSF has dropped from 90,000 to 85,000. People are understandably confused and scared. But the people are also mad and the people can only be lied to so much with a lie so blatantly obvious as this one against a college so large and deeply rooted in our community.

“We aren’t going anywhere,” roared the beautiful, multi-colored crowd of thousands of people who gathered on March 14 at City Hall in San Francisco.

“My ethnic studies teacher, my counselor and my women’s studies teacher all received pink slips. They are all about to lose their jobs if this push goes through,” Terrilyn Woodfin, my sister-mama, PNN poverty skolar, reporter and City College student told me. As I did more Wesearch I discovered that not only were massive layoffs being threatened, but administration staff and teachers are being told not to say anything and just go along with the flow to keep their jobs.

“What makes it so crazy-making is the people are being lied to in so many ways,” Shanell declared, proceeding to describe how Propositions A and 30, giving $14 million and $376 million to save City College, were passed resoundingly by San Francisco and California voters to protect City College. Yet no matter what, the corporate forces say, “It’s not enough,” and proceed with their deadly corporate wrecking ball trying to make sure that our people’s college no longer belongs to the people.

“Whose college? Our College!” The wave of thousands of people’s voices at City Hall rang in our collective ears. If we ever needed to put our bodies in the forefront of this fight, it is now.

Please show up with your bodies and souls to the Southeast Campus of City College, 1800 Oakdale at Phelps, in Bayview Hunters Point, San Francisco, on Wednesday, April 3, 6 p.m., to get involved and/or go on-line to saveccsf.org.
 

“All of the victims (of Po’Lice murder) visited me in my dreams when I was making this movie,” Ansar El Muhammad "Zar The Dip"  spoke humbly to the huge audience of the Black Repertory Theatre after the showing of his first and power-FUL documentary film Crimes of Police at the Oakland Film Festival on Saturday, April 6th.

“Between 2010 and 2012, four unarmed black males were killed by police in San Joaquin County in Northern California. Additionally, within this same time period several unarmed black males were also killed by police in the Northern California cities of Oakland and San Francisco.” From the Oakland Intl Film Festival Synopsis of Crimes of Police documentary

“I started doing the movie because I knew two of the victims, Luther Brown and James Cook but then when I began creating the movie they all began to visit me in both dreams and nightmares,” Zar the Dip told me after the screening. When I heard Zar speak on this I remembered the teaching of my strong Black-Indian mama Dee who always taught me to listen carefully when our ancestors visited us in our dreams. “They have messages for you, they are showing you the way,” she would say, following her Yoruba/Taino spiritual traditions innately as we struggled together through so much poverty and police harassment throughout my childhood.

Through a series of interviews with family members of victims, excerpts of protests and press conferences and then conversations with John Burris’ Diante Pointer and Black Panther Elaine Brown, a story of an occupying army who call themselves the police, killing our fathers, our sons, our brothers and our neighbors, is told in this hard documentary.

 “I’m crying so much, my eyes feel tired, Dione Smith, mother of James Rivera, one of several men of color murdered by police in Stockton, California spoke haltingly in one of many clips that featured the families left to tell the tragic stories of so many young Black and Brown men including Oscar Grant, Alan Blueford Jr.,  James Rivera, Kenneth Harding Jr, Ernesto Duenez Jr., James Cook, and Amadou Diallo to name a few.

This first movie by Ansar El Muhammad "Zar The Dip" rolled through stories of broken lives, broken families and eternally broken In-Justice system, which poor peoples and peoples of color must survive under whether we like it or not. While I watched the stories of so many survivors, I was catapulted back in time to when me and my mama were endlessly Po’Lice harassed by Oakland and Berkeley PD for he crime of living in our car, for driving while poor and for being poor and homeless in Amerikkka. But most of all this movie brought me back to the resistance of us families of color to fight the racist, classist occupations of our communities

I spoke up at the Q&A at the end of the movie on the ways that POOR Magazine as a poor peoples-led, indigenous-peoples-led movement has adopted a No Police Calls rule, how this is very hard rule to keep when so many of us poverty skolaz are also in struggle with the poisons so easily accessible in our communities, and our own deep pain and trauma which we sadly and often perpetrate on each other, but that we do through following the ways of our ancestors- through a process we call Family council, which holds each of us accountable and works out consequences through healing practices and personal accountability. Most of all we do it because no matter what we know as poor peoples of color we can’t invite the police into our lives to perpetrate more harm in the name of “security”.

“We have to be strong, as a family, to fight, to keep the community remembering my son, (Ernesto Duenez Jr.), Rosemary Duenez spoke while sitting in unity with her power-FUL family in resistance to the lies, smear tactics and harassment employed against Ernesto Duenez which now extend to Ernesto’s brother who received a restraining order for peacefully protesting the racist police in Manteca, where Ernesto was murdered.

This power-FUL movie’s dedication to the truths of Black and Brown young men and their families, who this amerikkkan system would rather vilify, criminalize and silence reminded me of the many teachings of Nigerian writer Chinua Achebe, who stressed the importance of writing our own stories, to control our own histories. So the colonizer could not keep telling their lies, un-disputed.

Crimes Of Police does just that, allows us to tell our own stories, in our own voices, to resist the ongoing lies that corporate media and corporate police always disseminates about our fallen sons, which the solemn narration by Zar the Dip reminded us is the standard procedure followed by police departments to discredit the humans they murder, beautiful, peaceful fathers like Mario Romero of Vallejo, community leaders like James Cook and youth skolaz like Alan Blueford Jr..

Crimes of Police serves as a filmic tribute to the truth-telling and fierce activating of so many of our family members like Cyndi Mitchell, (sister of Mario Romero,  Mesha Irizarry, mama of Idriss Stelley, and founder of the Idriss Stelly Foundation, Denika Chatman, mama of Kenneth Harding Jr., Lori Davis, mama of Rahiem Brown Jr, Uncle Bobby, uncle of Oscar Grant,  and so many more mamaz, brothers, fathers, uncles, aunties, sisters, sons and daughters who can’t stop, wont stop until there is some real justice and no more just-US.

Follow the Film on Facebook at Crimes Of Police

As terrifying as being on the outside looking in is, being on the inside wanting out is worse.

Needing to feed my face and pay the rent, I had taken a low paying job at the old Crocker Bank and after five years was making only around four dollars an hour doing office work.  Having come to the point of overdrawing my checking account, I asked a bank officer if she would advance me twenty dollars until pay day.  How many others have asked that question?

“No, because that would lower my savings account to a point where I would not be drawing top interest,” replied the bank officer to my inquiry

“The New York Times reports that the Dow Jones Industrial Average is setting new records, and on the same page notes that the numbers of homeless people and people living in poverty are also setting records.”  – Tim Redmond, San Francisco Bay Guardian blog, February 13, 2013.

The next day the bank officer gave me a canned tamale.

Who corrected the bank officer’s writing for the bank procedures manual as it was put into the computer?  I did.

Echoing through my mind are such remarks as, “How would you know I made a mistake in my statistics?  You’re just a word processor with a Master’s degree in English.  I am a bank vice president with an MBA.”

But did the VIP thank me when she found out I was right?”

No.

Trying to escape the bank, I discovered that it did not give employees seeking outside employment recommendations.  It just verified employment and whether the bank would hire us again.

As Edward R. Murrow reported in his television report “Harvest of Shame, the plight of the migrant farm worker,” one landowner stated, “We used to own our slaves.  Now we just rent them.”

And what in 2013 is the solution?  You tell me.

On the crisp August night when everything came grinding to a halt between me and mom, I found myself losing track of her cold, confusing words, feeling only the poly-blend hotel comforter scratching against my skin. “I know what you’re doing,” she argued, having collected herself after her sobbing collapse earlier in the evening. Now, she was a lawyer again, making her case about me based on the evidence she had gathered. “Just don’t. Don’t do this transgender thing.” She had always told me she loved me unconditionally, but suddenly I found myself standing, nauseous, my toes curled over the edge of the line in the sand she’d just drawn, scared I was about to crash into dangerous territory that our relationship couldn’t survive. Like a lot of other queer and trans people, my relationship with my parents strained and felt like it might break when they had to reckon with their panic about my gender.

According to a 2011 study by the National Center for Transgender Equality, 57% of transgender people surveyed experienced rejection from their families for being trans. 40% reported that a family member chose not to speak or spend time with them after learning they were transgender. 19% experienced domestic violence because they were transgender. The most powerful statistic explains that family acceptance is correlated with “positive outcomes,” and family rejection is connected with “negative outcomes.” What that really means is that people who are rejected by their families are more likely to become houseless or commit suicide.

My experience with my mom falls somewhere in the gray area between all of these numbers: no one in my family ever refused to speak with or see me for being trans, let alone hurt me physically. I don’t know if I would say I experienced “family rejection” or not. But my relationship with my mom was fundamentally changed by her feelings about me being transgender. Most of the trans people I know have had some kind of struggle with their families. Sometimes these struggles are transformative, reshaping the foundations of relationships to be more loving and honest; sometimes they are destructive, and people are disowned and forcibly separated from their families because of them. 

In the worst moments of my relationship with my mom, which came in the three years after our night in the hotel, I was afraid that we had reached an impasse. It felt like the wall between us—at first only built by rocks and pebbles that accumulated over time—was cementing into place quicker than I could stop it. My head and heart were filled with stories of trans people whose relationships with their families had collapsed under the pressures of transphobia, frozen communication, and separation. I was terrified, but I was committed to my mom—and she was committed to me. I did everything I knew how to do to hold our relationship together temporarily until it could start to heal permanently. During the time that my mom and I were shut down to each other, I was surrounded by chosen family that helped keep me afloat emotionally.

Transgender people and our families will struggle with each other as long as transphobia and gender policing are the norms in the society we live in. What the statistics can’t explain is how families arrive at “acceptance” of their trans family members, and what I’ve witnessed is that it’s both simple and difficult: it takes work. Most non-trans people need an immense amount of support to confront their own judgments, fears, and transphobia. This support can come from friends, family members, and from people who can teach on trans experiences without pathologizing them. As trans people, we need support from people who don’t question the decisions we need to make to survive and be well; we need access to respectful holistic health care; and we need allies who can talk to our families when we can’t. Many of us—children and parents—need to unlearn the ideas of separation and individualism that we have internalized, which have taught us that we don’t need our families and that we should leave them behind when it’s hard. We need to push ourselves to go back to our families to fight for healing when the time is right. Being good children, daughters, and sons to our parents doesn’t mean accepting their transphobia, but it does mean committing not to give up on each other.