Ableism

The question posed to me is a simple one -What is ableism?  This post is an attempt to answer this .

I want to start with what it isn't .  It is NOT about the prejudice notions of ability that impact people with disabilities. It is NOT solely about the discrimination that happens to people with various disabilities.   What it IS a system of beliefs and values that assert a cultural norm that regards able bodied as ideal and disabled bodies as inferior. It further asserts a hierarchy within disability , with those individuals who have a profound cognitive disabilities at the very bottom .

You see prejudices are informed by values and beliefs.  Discrimination is the active perpetuation of these beliefs. The values and beliefs you hold around one's inability to do something is informed by very basic ideas of what it means to have value . To be worthy of being called human . Our discussion of intelligence , around genius , around fitness all reinforce the fact that there is an ideal human being . We should all desire to be better , stronger , faster , fitter, smarter. Right ?  What is wrong with this, need you may ask?  Seemingly nothing , when you look at it through an individual goal of being the best you can be . Right?  But what if your best is average or for goodness sake , being the slowest ? How do we feel about that ?  Is that ok ?  Why ?  Why not?  Would you rather die or lose a limb?  What if you lost your current level intelligence ( as we currently measure it ) ?

No matter how you answer those questions , think about what informs it.  This is where you get to the heart of ableism.  Because those thoughts in the recesses of your mind will impact policy, school choices , community activity , etc.  So all though those questions are about you , it will ultimately impact someone else.  Thus creating a system.

This of course is complicated by race , class , gender , sexuality . But then again not really .  At the core of white supremacy is a discussion of ability and often the response of the marginalized race or ethnicity  is to prove their fitness .  The question of why we center those conversations intelligence , body fitness , etc are rarely challenged, but remain at the crux of the discussion.

I could go on . But I will leave you with this.  When my son was born , it wasnt the long list of all his possible defects that made me sad, although I did have to actively work against the idea the idea that my son needed to be fixed . But when I cried that night , and a few nights since , it was because I was raising a young black disabled son in a world that did not value who he is .  That that extra chromosome placed him further in the margins .and it was not he who needed fixing , but it was society's view of him that needed to be mended . What complicated it further was juxtaposing that against the knowledge that he would need help with things and being clearly that assistance does not make him less of a person .  But that was and continue to be active work , because he was born to an able bodied mama , who has also received this messages and needed to unlearn many of them .

It is at this moment , it is such a critical time to create a space to unlearn the messages we have received .  This is the only way we can disrupt the system .

So , now I will really stop .  Thoughts ????

My Interview with disabled writer and activist Leroy Moore, Jr.

Happy New Year !!!!!!!!

(Cues DJ Eric B.) It's been a long time , I shouldn't of left you. Without dope blog to step too ....

I am excited to bring to you my interview with Leroy Moore, Jr. who is an African American disabled writer, poet, community activist, and feminist.  I often read his work as a columnist of Illin-N-Chillin on Poor Magazine and continually find myself learning something new or feeling validated in my critiques of the injustices happening to marginalized folk.  Leroy is also the founder of Krip-Hop Nation (an international project of Hip-Hop and other musicians with disabilities) and Co-Founder of an igroup of artist called Sins Invalid:An Unashamed Claim to Beauty In the Face of Invisibility.

As a Black writer, poet, hip-hop/music lover, community activist, feminist and consultant on race and disability with a physical disability, he has been sharing his perspectives on identity, race, and disability for the last 13 years. His work began in London, England where he discovered a Black disabled movement which led to the creation of his lecture series, "On the Outskirts: Race & Disability". He is also producer and columnist of Illin-N-Chillin at Poor Magazine and creator of Krip-Hop Mixtape Project. He is one of the leading voices around police brutality and wrongful incarceration of people with disabilities and has studied, worked, and lectured in the field of race and disability concerning blues, hip-hop, and social justice issues in the United States, United Kingdom, Canada, and the Netherlands.

Q&A With Leroy Moore, Jr.

TALINA: How would you describe Disability Arts? Disability Culture? In your mind, whom does it appeal to, in other words, who is your audience?

LEROY:  In my view as a Black straight man, disability arts/culture does not lay separate from my other identities and is a process of self empowerment that bumps into society’s oppression but if you hold on to it and mix it up with your full identity then it becomes less of I and more toward a cultural community that has a rich and colorful history and future.  Knowing that you are adding to what has been there, makes that person see that it is stronger then oppression and what popular cultural wants you to believe.  Thus, nobody can shake the art/cultural foundation that you are adding to- cause it has always been there.  Some times we as artists/activists/authors need to define our audience for marketing sake and in the beginning to get approval but beyond that period I think all art, writing, teaching is and needs to be for everyone if we want real change.

TALINA: In what ways have contributing to the disability rights movement via arts and culture impacted your identity?  Do you hope to influence the younger generation’s ability to identify positively with disability culture? How?

LEROY:  Being an activist in the disability rights movement and educating others about disability culture has extremely impacted all that I am today. Race has also played into my experiences in the disability rights movement and in my cultural activism through my poetry, songs and or performances in a key in most of my cultural projects that I do.  For example, the creation of Broken Bodies Police Brutality Profiling Mixtape came out of my decades of activism around police brutality cases involving largely Black and Brown people with disabilities.  Not all of my cultural expression is about my identity. I also like to challenge myself to be a better alley in other communities in my writings, events and products that I put out.  For example in 2009 Krip-Hop Nation (A project that I started) first public event was Krip-Hop and Homo-Hop bringing Hip-Hop artists who were disabled and queer to try to break down this wall of hush hush and so much more.  In February I’m putting out a mixtape of poemsongs that deals with sexuality, relationships, disability and our need to be wanted. I think the mixtape will have a message that goes beyond identity.  It’s humanity that anybody can understand but at the same times it explains some of our experience as people with disability looking for love and respect.   I hope to help the youth especially disabled youth of color to be critical on what they hear, see and read from mainstream and institutions and to take what I try to lay out and take it apart agree or disagree with it but to build on it with their own art, words, music and visuals etc.

TALINA: As a mom , who is very aware of identity politics and identifies a woman who subscribes to the black feminist thought process, when I worry about my son navigating the world …it is not him I am trying to fix.  It is society’s view of him, particularly because of the intersections that have impacts on his life.  Can you describe the impact of being identified as black male and disabled, or is there one? 

LEROY: I use to react to how people identify me as however in my forties I make my own impact and that is with my whole self that stems back to the knowledge that I have a strong cultural/activism history that I’m contributing to.  It’s a hard road because many have tried to put roadblocks and it is easier to give into the peer pressure as you grow into a person with a solid foundation of who you are.  But once that formation becomes solid then it’s no way of breaking it.  The two things I always recommend to parents are (1) consistently diversify not only in people but also places, situations; books etc. and (2) promote your child’s critically thinking not only among their peers, but their elders with a good framework.  It is important not only to disagree to disagree but to be able to back it up on why and to show a different point of view.  I think both elements can lead to a person with a sense of who she or he is and that can be protected from outside pressure to conform thus feeling comfortable in his/her skin and at the same time recognizing and welcoming diversity.

TALINA: Do you think it is important for the disability political and cultural movement to have multicultural faces and stories?  Why? What are the barriers? Any solutions?

LEROY: I been saying this since I was a boy that disability has diverse faces, bodies, skin color and as I got older and let myself  be schooled by others I also learn and carry to this day that disability is fluid like our sex , our families and our partners.  This must be presented on stage, in books, in the music we buy, on TV. Online etc. but we need to do it and not relay on others. It don’t matter how small or large, with or without an agent, publisher, mainstream TV, etc. cause we are building on what our disabled ancestors left us and also people are looking to us to show that mirror to the world.  We have art, music, activism, solutions that needs to be display and at the same time we need to listen to others knowing that our disability is only one aspect our identity but we belong to a world that is diverse and holds so much education that can and has benefit us all.

The barriers are always there and sometimes feel overwhelming more on a systemic level than an individual level that makes any individual feels helpless.  Like when mass mainstream media continue to misrepresent us as people with disabilities at a time of economic downturn, a public crisis or on the other end using pity to stir up reaction all by using our identity in a negative light.  In these situations we must support our local activists/cultural workers with disabilities that are disruption that framework with their own empowering, political educations, historical and popular artistic avenues.  Sorry to say but as a whole we don’t support the good what goes on at a local smaller level and I hope we as a community will continue in a big way to change that.

TALINA: Do you have any advice for parents who are raising children of color with disabilities? Do you think it is important for them to expose their children to disability arts and culture? Why?

LEROY: I think I answer this question in the previous question however I think the world would be a different place if kids were raised with some kind of diversity every day.  Can you imagine if a youth of color was raised with exposure to not only disability but also all types of identities at birth until their teens on a regular basis?  It would be a different world.  Parents most of the times are so concerned with services and legal rights for their disabled kid of course but can you imagine if we add the cultural, history, art and music of people with disabilities as a subject to pass down to our kids like the laws and services?  It would help develop a strong sense of belonging and pride.

Thank you for your time, thoughts and contributions to the movement. Because of you, I have another positive role model for my son, and for that I am eternally grateful. (TJ)

 In the early days of gathering information about my son's diagnosis , I was looking for some culturally relevant information  I wanted to know in what ways would raising a young black man be impacted by his diagnosis of Down Syndrome. I was trying to craft a vision for my son's life, a path and I could not find information,  beyond medical lists of doom and gloom , that included my culture.  Fast forward 5 years later, enter social media, training projects , etc and access to wonderfully diverse communities of parents and experiences etc , but more importantly , access to adults with disabilities who are advocates , activists  artists etc from all different types of backgrounds.  
            
Talk about renewing my vision.  While I have never had low expectations for my baby :) ( I can hear his father now , yelling , he is a big boy !!! Sheesh )  , I certainly can see a clearer path to him being an artist.  Why is that so important ?  Because it informs the choices I make for him now. It also helps me to cultivate a positive identity with him.  In the same way , I feel compelled to take him to the Schomburg Center in Harlem , or listen to the blues , or break dance to hip hop, I also feel compelled to make sure he has those same information and inspiration via his connection to disability arts and culture.  What he does with it when he gets older , who knows .  But it is important for me to connect with folks like Leroy to inform my notions of what his life might look like  beyond just a quest for services ( that part of his answer was very powerful and challenging .... Love it!!) 

Your Thoughts??? 

Dedicated to my friends who are committed to the future

cool end of the year books the teaching staff made of Taj

Could not believed they made such an inspiring book at the very end of the school year

 So our children have been out of school for about a week now in Syracuse. And all I have to say is ......TEACHERS ARE AWESOME !

When they do things like this , parents get to see what our child's year looked like

You may be wondering how did I go from vacation to exclamation . Let me tell you . My son is a handful.  No , a cupful . Nahhhh more like a jarful of pure unadulterated energy. Sometimes potential, sometimes  kinetic.  Those that can help him shift between the two are golden in my eyes , and for some reason teachers seem to be the best at it . I am his mom , I love him to death.  But this past week , I wondered - Oh my goodness , does he act like this in school?  What do they do when they get frustrated , because if he says 'Fine , ok !!!!!!!!" on more time ... I swear!!!! So , I then realized that they  have him , plus 20 or more (make that 25 or more in some schools) other children to deal with , and it makes you want to ring a bell for them or something so that they can get their angel wings.

Alas , teachers have gotten a bad rap this year.  We've had numerous stories of monstrous people berating and belittling children , particularly those with special needs, and rightfully so have called them out for their heinous behavior.  And while I wont get into the conversation about our ability to remove those teachers, I dare say other teachers should not be painted with the same color brush.  I have experienced teacher who didn't give a damn , wasn't from my community and did not care about the children who were in front of them . But there were also those who went above and beyond , made sure we were giving it our all , maintained a level of excellence in teaching and learning and cared about the children's lives who were in front of them,.

These teachers are rarely in the news.  My second grade teacher didn't make the cover of the New York Times even though she checked on me no mater what grade I was in in Elementary , to make sure I was "wearing my spectacles" to satisfy my mother's request when I was 7.  My son has had some excellent teachers and therapists since early intervention, particularly when we moved to Syracuse. This year , his teacher was courageous enough to tell us how he was having a hard time understanding Tajee and hoped we could help him think of ways to facilitate easing the communication barrier...along with his speech therapists. I say courageous because how often do we admit to "not knowing something .  His goal was having Taj learn , not whether or not he could save face . Awesome .

As a nation , we tell our kids  - Education is so important . A mind is terrible thing to waste. Or my grandmother's favorite, "education is the great equalizer".  However , we don't support the people who are responsible for giving our children the very education we literally hang their future's on.   I am sorry , but in a country where we are so quick to support private companies and their profits of billions of dollars because they EARNED it , how can we be ok with the fact that the average starting salary for teachers are less then 40,000 dollars a year but they need master degrees and certifications in order to do their job?  What happened to the notion of "EARNED" there.  The supports such as computers , smart boards ., whiteboards , markers, art projects , musical instruments, BOOKS- for god sakes, have found their way OUT of the classroom or in only one or two specialized classrooms .  How are we expecting folks to teach , when buildings are dilapidated or too old to properly maintain a wifi connection - but still want teachers to teach?  But guess what teachers want to know ... if their students are LEARNING . And THAT my friends , will always be the sign of a good teacher .  And I am sorry .  Way more teachers understand that they are doing their best to foster learning in very mediocre conditions and yet we are coming down on them like a sledgehammer , further lowering morale.  That's not copacetic in the least.

Our teachers need our support .  Our principals and administrators need our support. And by that I mean more than an appreciation luncheon. ( Even though folks love those - especially when you get the good cooks to bring a dish LOL ) . No , seriously . I am talking about you, your friends sending a letter , email , postcard whatever of support . Not only recognizing the amazing work teachers do , but also letting policymakers know that teachers need the appropriate tools in order for children to learn.  So while I am sure that our children's educators , appreciated the magnets, cards , and baked goods we gave them at the end of the year , I challenge you to give them one more gift and that is - the gift of solidarity . Send your stories to your Superintendents ( you should be able to find their email and addresses on the school districts website ) , Governors ( if you are in NY ,  you can go here http://www.governor.ny.gov/contact/GovernorContactForm.php )

and  Arne Duncan, U.S. Secretary of Education ( Contact info is here: http://wdcrobcolp01.ed.gov/CFAPPS/employee_locator/employee_detail.cfm?id=6201)

Tell them your stories of great teachers and principals in public education , tell them what your classrooms look like and what they need in order for our teachers to continue to do their best work.  Let me know if you did !!!!!

My Birthday is coming .

SO , My birthday is next weekend .  I have been thinking about what I want and it came to me while watching a PBS documentary on Louis "Satchmo" Armstorng .  I want a record player !!!!! I want to go to the store and buy vinyl records.  Although I am not "old"  per se (Lord knows that's relative ! ) , I am feeling very nostalgic and I want to hear the crackle and pop of a record in a song while it plays. I want to hear that sound when the needle first touches the album and you are waiting for the song to come on .This sound  !! I want to hear sounds that were specifically arranged to be captured on record , not remastered.

Thus I am currently in search of one , and much to my surprise , they are not obsolete.  The internet continues to be a resource and Amazon online had tons of options including ones that will allow me to convert to MP3 files.

You may be thinking to yourself , didn't I just read two "fight the powers that be " posts from you the other day , why the switch up ?  They say music soothes , yes?  Thus , after I get worked up like that , there is a high probability that you are going to get a music post . The explanation for that is in my discussion of the naming of my blog in  My symphony of a life .

Roy Ayers - Ubiquity

Herbie Hancock - Empyrean Isles

I was asked by my sister in law to share my top ten albums that I would want to initially acquire , and they are as follows (in no particular order )  :

Loose Ends - Zargora

Duke Ellington  Live at Newport 1956

John Coltrane - Live at the Village Vanguard 1961

The Roots - Illadelph Halflife

Having a really hard time finding the vinyl , even online 

Love Jones - Original Soundtrack

A Tribe Called Quest - Midnight Marauders

De La Soul - Buhloone Mind State

A Tribe Called Quest _ Peoples Instinctive Travels and the Paths of Rhythms

What do you think ?  Any suggestions?  Do you know where a great vendor that would have Jazz , Hip Hop , RnB vinyls ? Please share, as I need to quiet my spirit.

As always , thank you for reading .

Lana.

Its good to be different.

When my son came home from school yesterday, he was starving as usual. When I told him he couldn't have cookies but could have an apple the look of defeat swelled in his eyes. These massive tears started to flow and he reached out to hug me , looking for solace in his collapsed world of cookiedom. Of course , I hugged him and told him that he couldn't have cookies ALL the time , and that today we were going to have fruit. He repeated "fruit " in this very sad voice. I told him the apple was sweet like a cookie. He perked up a little and repeated "cookie". I said " No baby , you can't have a cookie but you can have an apple" . "Ok", again the sad voice is there but not as sad this time as he reaches up to hug and kiss me and almost console me as much as I was him. We go and get the apple and he is so dang happy to show me that he is eating it like I asked him too.

In that moment, I realized something. In all of my son's identity , I try to shift his diagnosis of Down syndrome to the back of my mind. Not because I am ashamed, more so because as a family, we reject the idea that a persons disability tells you ALL that you need to know about them. However, that moment connected me and him with Down syndrome. I saw the slant of his eyes and the way his mouth gently opens when his face is relaxed. I heard him repeat the last words of what I said to him , knowing that he is understanding most of it but not always sure of how much, and being ok with that because who knows what everyone is thinking. I know for every stubborn bone in his body, that there is the intense eagerness to please. I held him tighter at the last thought... knowing that while that is such an amazing trait to have , this world is way to cruel for it, as well. A few tears fell from my eyes, more connected to the cruelty , then his disability. But I quickly went back to just adoring him for the moment.

We sat and smiled at each other as we ate our apple slices. He told me I did a "Good Job,mom". I told him he did one too, which made him quite proud of himself. He was really tired after his long day from school. So he and I turned on an episode of Martin (I'll have to do a blog post of the enormous savior that is the Martin show) and laughed together. Although, I was actually laughing at the fact that he knows every line and expression of his favorite comedian. His capacity for learning and loving are both so immense. It is the beauty of children, really. That extra chromosome adds a distinctiveness in that beauty. One that I will be sure to recognize more often then I have been.


Happy World Down Syndrome Day !!!!! http://www.worlddownsyndromeday.org/content/national-down-syndrome-congress-awareness-event.

While yes , the campaign by the NDSC is "We are more Alike, then Different" - I don't want to forget the beauty in diversity . It makes us who we are .

Until you find a chromosome for assholes , leave my child and those like him alone .

You know, everyone gets to be frustrated by something ... and speak out on it if they want. However when you start talking about not using the word "retard " or describing something as "retarded", folks start waving the " I am not PC " banner . Well that's fine neither am I ... SO HERE WE GO!

The prenatal debate is not about abortion rights. YEP, I said it. So don't go there with me. Prenatal testing is seen by the medical community, as well as expecting families, as the ability to gather information about your child. While not all doctors are guilty of this, there are still no shortages of anecdotes about the extremely negative information one is given whenever one tests positive for the possibility of their child having a diagnosis of Trisomy 21 (Down syndrome). Other chromosome abnormalities and genetic disorders can also be detected (i.e. Cystic Fibrosis, Spina Bifida, etc.). Now should parents have this knowledge and the information that comes along with it? YES. The reason the book, "What to Expect when you’re Expecting” is the go to handbook for pregnant women,is because we are looking for information. But could you imagine if that information read something like this "These children have heart issues, hearing issues, vision issues, are mentally retarded and don't have a long life span"...and then you look up from the book and someone was standing there and said "So , what are you going to do?" I'm sorry, but I cannot say for certain what I would have done. The fact remains that I was 24 years old, all my prenatal testing came back normal and I didn't receive the diagnosis of Trisomy 21 for my son until I was in bed in the hospital post natal , while getting a blood transfusion while hearing this exact list. And I had not held my child for more than 10 mins. was also asked what am I going to do ? *screwface *

Why would people tell us such a negative things, only. The reason there are so many YouTube videos with really nice songs playing behind beautiful children with trisomy 21 is because the parents are screaming to a world that sees their children as a laundry list of the worst things ever, that HEY , my child is ok -- Look they are beautiful, smart, kind, funny , sweet stubborn ... JUST LIKE YOUR CHILDREN . Don’t get me started on why it's the end of world when someone says one has a disability , but we live in a world where abnormal doesn’t just mean not normal , but it means "less than" normal, which is a whole other' thing. I digress. But the point is when parents only get this side of the story, you wonder if there is an effort to make sure children with these differences are no longer born. Please don’t look in horror, we are the country who had a very profound eugenics programs in the early 1900’s. We still do unethical medical testing and in the '80's if you don't know the story of Baby Doe, please read it. When it comes to people with disabilities, the ethics of the medical community and governmental agencies, leaves much to be desired.

But back to the rest of my post.
Here is the thing. Just because you know my son will have an extra 21rst chromosome, and everything on that list may or may not apply ... is his life any less valuable, then those who will not have those issues. What is the difference between his outcomes and the outcome of a child who is considered typically developing? We just started educating children with disabilities, a little  over 35 freaking years ago. People were locked away in institutions, some still are. When we closed institutions in certain states, we did not fund the supports necessary for them to live in the community ... If your child does not have a disability; tell me did they need your support in school. Did they need help with their homework? Did they look to have friends, and felt isolated when they didn’t? Was their goal always college? Are they still living with you? What would they do, if you weren't here tomorrow? All of these questions and more are relevant to all children and speaks to the fact that we live in communities in which we need to support each other.

Please understand, that I am not saying having a child with a disability is easy. I don't think raising children is an easy task. And I should probably let you know right now, I am not going to give you, "I mourn the loss of a perfect child" because I don't believe in perfection. I do recognize this sentiment however and understand every family has their own journey. No judgement here.

I do know this though. I know that there are a lot of people who are in the world today, who are real assholes, mean spirited, jaded individuals, who I would never put on a they don't deserve to live list... but some would say the world would be a better place without them (My social worker spirit makes it hard for me to say this because I DO believe everyone has a story and has value.) But apparently they didn’t link asshole with a specific chromosome, when they mapped out the human genome. So we just have to deal with them. But because, you can find my son's difference, his triplicated chromosome ... do not assume you know his story. A diagnosis gives you some information, but it doesn’t give you all the information. I never knew love like the love my son gives me. I am thankful to him for showing me. I didn't know I was capable of loving someone the way that I love him. I am no saint , and he is no angel. But we do thank god for each other and his dad - can't leave out the other super important person in this trifecta of awesomeness.

But I guess we have to start valuing the people with disabilities who are here ,first, before we can really tackle that issue at hand. In the meantime, kudos to all the parents, national groups, and doctors who take the time out to give expecting parents the information they need to make an informed choice. A truly informed choice.
So, until then …leave our children alone.

* See folks , everything is not hunky dory , but if you choose to have a child with Trisomy 21 (Down syndrome) , with love and support in many different ways , it is ok .  That kiss, that smile , hearing him say his name ..makes everything worth it *  !