Some of the hardest moments for me as the mother of a medically complex son, now 24, are the way decisions are made about him and his life without any input from me or him. Most recently it was announced at an annual review meeting at his group home that he was found to be at high risk for water activities because of seizures and would not be allowed to attend any water activities with the group home staff. I find this to be extremely limiting.
Nathan has about 20 seizures a month, all under 4 minutes. If he has a seizure in the water he is brought to the side of the pool or pond and laid on a towel where he can easily be attended. I find it sad that these activities which bring him much joy are limited with a passing comment in a routine meeting. I did rally myself to object and ask for a medical review. But I would like to question here, the value of growth and challenging oneself with some risk.
Nathan was born with severe physical disabilities, arthrogryposis multiplex congenita; his extremities were showing that all the bones were there, but the hands and feet were misshapen. Metabolic and genetic work-ups suggested an unidentified metabolic abnormality. More recently genetic sequencing studies have shown a de novo genetic variant that is shared by another child in Illinois. The clinical presentation is similar in that individual and my son. There is neuromuscular delay and seizures. This genetic variant also explains my son’s need for insulin.
I don’t know how the other family has chosen to care for their son. We kept Nathan with us and pursued any activities which brought him joy. He gets a lot of physical therapy, because he likes to move. He loves to swim. This began when he was about 4 months of age in an above ground pool in the back yard with his 3 older sisters. His oldest sister looked into swimming with the dolphins when he was 5 and we went with another family to Florida to do this. There is a theme here which I think is apparent. Not only is it easier to move in the water, but there are others around one swimming, laughing, shouting, having fun.
Nathan rarely has a seizure in the water, I think because he is having fun. His seizures are often startle seizures that happen as he is waking up. He will tune out when he is bored or tired. If he is engaged in an activity he enjoys he seems to have less seizures.
His elementary school engaged the services of an agency that helps people with disabilities join others their age in snow activities and water activities. He was able to use a paddle boat and swim and also to snow ski and go ice skating. Later in his elementary school life his aide took him swimming at the local “Y” once a week.
Who should have the final say in this risk? The group home staff? The agency overseeing the Group Home? The Department of Public Health? His medical providers? Nathan? Myself, his guardian and medical advocate? Nathan can express his preference with eye gaze. He does this to choose movie or music activities, or to read a book, or to take a walk, or to vote. Do we have different standards to evaluate risk in people with disabilities? Is it not age appropriate for young men to choose some risk in their activities? Is he not allowed to have some fun?
The seizures are scary to witness. They only go on for a few minutes, never over 4 minutes and generally are 1-2.5 minutes. Nathan can turn blue. He used to quickly recover. Now he can need oxygen for 15 minutes or so to regain good oxygen saturation levels. Medical providers have stated that it is OK to have oxygen saturation levels in the 70’s for 5-10 minutes before beginning the oxygen supplementation. For Nathan oxygen saturation levels from 85-95 are desired. But it is the fear factor that seems to complicate this whole discussion.
Nathan has always enjoyed swimming or riding in a canoe, or swimming with the dolphins in Florida. He always has an attendant or two with him. Are we limiting Nathan’s time in the water or on the water because it is risky for him or because the caretaker does not want to experience fear? Nathan has been swimming for 24 years without issue. This is clearly a risk that can be dealt with safely. And water activities have provided Nathan with much enjoyment over the years and even helped his strength and flexibility.
It has been suggested to me that this decision is based on liability issues. This may be true. There are no answers coming from the group home or the agency which oversees the home. I have no way of knowing how this decision was made. But I do know my son. He enjoys swimming, the risk involved can be anticipated by swimming in waist deep water for the attendant where it is easy to contain him if he has a seizure. The potential risk is worth every moment of joy in the water. How do we want children like Nathan to live? How does Nathan want to live is an even better question? I question all of us to look at how we arrive at these decisions that affect those we care for. For myself, as a parent and as a physician, I try to honor the wishes of the individual whenever possible.
Kathleen Grandison, MD, has practiced Family Medicine for over 40 years. She is now working in Urgent Care. She is the mother of 4 children, ages 24, 27, 31, and 36. The last child, Nathan, was born with severe disabilities and is now living in a group home for Medically Complex Men. Kathleen lives in Western Massachusetts.
Leroy Franklin Moore Jr. is a Black writer, poet, Hip-Hop\music lover, community activist, and feminist with cerebral palsy. Born in 1967, Moore is a native upstate New Yorker now living in and working from California. In a recent phone interview with Sorcha Hyland for Hawk Hopes Blog Moore reminisces on the world he grew up in and the impact it has had on his art and his work. He begins by describing his father’s huge record collection which filled the family basement. Moore spent hours playing music and looking at album covers. As a child with a physical disability, he was particularly taken with the many records he found by Black artists with disabilities.–
Walter Jackson, Robert Winters… a lot of blind artists. At the time I didn’t know but it really gave me support to deal with the lack of anything in the school district around disability. Back then it was in late 70’s early 80s- way before the IDEA or ADA had any effect. It really forced my teachers to recognize disability as a culture. Those records really gave me the strength to take it forward. It got me into Hip-Hop when Hip-Hop started.
The memory is evocative if not, in part, metaphorical for Moore’s life-journey to date. Much of his work seeks to uncover and promote the histories of Black musicians and artists with disabilities in the United States. This journey has also included building networks with other musicians with disabilities internationally, as Moore shares later in the interview. In a world over-saturated with images of Whiteness and able-bodied people—this journey to center disability, and its intersections has not gotten any easier.
Moore disseminates and discusses his music archives and related findings at academic events such as the one that brought him to the University of Kansas (KU) last October. As a guest lecturer in the Disabilities Studies Seminar at the Hall Center for the Humanities Moore presented a pantheon of well-and lesser-known Black artists with disabilities. The stories, photographs, old films and recordings that he shares throw ableism, racism, poverty and the interwoven [White] histories of slavery, eugenics and capitalism in the United States into high relief. The visceral and sensual nature of the “data” he collects perforate academic discourses and historicity in creative and emotive ways. Just like his father’s album covers, stories of Black disability and musicality offer us powerful tools to expose the ubiquitous and silent construction of White, able-bodied “master” narratives while simultaneously re-constructing them (Lorde, 2003).
Moore’s teenage years in New York also coincided with the emergence of Hip-Hop culture. This world is brilliantly captured in a recent StoryCorps interview with Krip-Hop Nation co-founder, Keith Jones—for The Disability Visibility Project.
The young male and female artists who performed and partied on the street corners of the South Bronx and Brooklyn created these ciphers—DJs hooked their audio mixers into whatever available electrical wiring they could find. Vinyl became the raw material for spinning and scratching new sounds to accompany the improvised spoken word of the “MCs” (Masters of Ceremonies or Mic Controllers)—later referred to as rappers (Newman, 2005). Break-dancing and graffiti art were also critical elements of the culture, deepening Hip-Hop’s roots as a collaborative and performative art form of youth-led resistance to over-policing, racism, and generational poverty. Yet, as the “Black Kripple with the walker” even though Moore was artistically savvy— the Hip-Hop hierarchy denied him access to the cipher’s center field. As Moore shares,
I saw it on the corners before it went to MTV… I used to go to the ciphers in the Bronx…At that time, people in the ciphers were like huge – big strong men you know. And here I am with my walker, walking up. So I wasn’t empowered to be in the circle. I used to stand out. A couple of people realized, “Hey we should have Leroy be the patrol person when the cops are coming. Because the cops will do nothing with a disabled guy on a walker!” So I used to watch out for the cops. When they would pull around, I’d call “Poe Poe”. They’d scatter and leave me there with the walker and the cops would look at me and just decide “oh whatever”.
Rather than deter Moore, this clearly propelled him to ultimately find his own voice leading him, with Keith Jones, to co-create what they termed “Krip-Hop Nation” in 2007.
In keeping with original Hip-Hop culture, Krip-Hop seeks to artistically amplify political resistance to police brutality as evidenced in this US-UK Krip-Hop mix tape compilation pictured above, Broken Bodies: PBP: Police Brutality Profiling. Moore also has no qualms expressing his frustration with Black Lives Matter! Despite the mass re-mobilization of Black activism Moore remains concerned. Much as local chapters of Black Lives Matter! strive to center race with related intersections, Moore has struggled to have his work—particularly in relation to disability and policing—recognized by the national BLM leadership ranks. He says,
I think things have gotten worse. Disability isn’t seen as a popular issue so it does not get encompassed in big movements we see around police brutality. It doesn’t make sense that we keep getting left out. BLM haven’t responded to our Krip-Hop work or police brutality work. I am one of the founders of Sins Invalid– we used to reach out to BLM and had one conversation but till this day BLM has not gone deeper into Disability Justice or the work of one of its leading organizations, Sins Invalid. They also have not responded to the police brutality work that I do with POOR Magazine, Idriss Stelley Foundation both in San Francisco, or Advance Youth Leadership Power of Chicago and The Harriet Tubman Collective who un-released its statement last year regarding the Movement for Black Lives’ policy platform. The Movement for Black Lives, also known as BLM, launched its policy initiative August 1st, 2016, which highlights the disparities of Black Americans and provides a blueprint to stop the violence and oppression that Black people experience through six policy demands. Though the platform received a lot of praise surrounding its efforts, there was a significant aspect missing: the inclusion of the Black deaf/disabled experience, and how racism and ableism intersected for those who held membership within both marginalized identities.
Over the course of a life-time of independent research and column-writing for alternative media outlets such as POOR Magazine—Moore’s work highlights the extent to which musicians with disabilities face multiple forms of oppression. Krip-Hop requires its listeners and supporters to reflect on what unites and differentiates artists with disabilities worldwide, and where and what experiences of discrimination are shared. Krip-Hop as a musical genre, and an international network, offers a malleable and migratory medium for this message. Unlike language or the formalities of the written word, Krip-Hop requires no translation and it is rooted in what Moore refers to as the pre-MTV Hip-Hop foundation. It is built on the beat, and on the cadence, inflection and enactment of the spoken word in resistance to systemic forms of injustice and oppression. As an oral art-form, it has a transformative, collaborative and performative capacity that academic writing and more conventional forms of information-sharing simply cannot facilitate.
Krip-Hop’s power manifests in how it has enabled Moore to extend his own activism and agency internationally. As a network, it moves beyond defining membership or leadership on the basis of any one form of identity or US-centric experience, to seeking solidarity transnationally. It is inclusive of all who share diverse experiences of disability injustice, but more critically uses various performative acts to resist injustice publicly and regardless of what media or audience pays attention.
The network’s tagline—‘Krip-Hop is more than just music’—speaks to this broader scope and the communal power in its live and theater-like engagement. As Moore writes—
Krip-Hop is a community as well as a style of music, an artistic space where people with disabilities can speak out and speak back to the social structures that exclude people based on disability, race, sexuality, and a host of other marginalized identities…Krip-Hop’s mission is to educate the music, media industries and general public about the talents, history, rights and marketability of Hip-Hop artists and other musicians with disabilities from Blues to Hip-Hop internationally. Krip-Hop’s main objective is to spread awareness about the history, arts, and the “isms” facing musicians with disabilities along with putting our materials into the hands of media outlets, educators, scholars, youth, journalists and hip-hop conference coordinators.
Krip-Hop Nation, like academic research, is built on a solid theoretical framework. It has seven specific standards. According to Moore, Krip-Hop artists “try to”:
- Use politically correct lyrics
- Not put down other minorities
- Use music to advocate and teach not only about ourselves but about the system we live under
- Challenge mainstream and all media on ways they frame disability
- Increase voices that are missing from within and in the popular culture
- Recognizing our disabled ancestors, knowing that we are building on what they left us and nothing is new just borrowed
- Know that sometimes we fail to meet the above standards but we are trying.
International Krip-Hop chapters are led by Moore with Keith Jones and Rob Da Noize Temple in the US, Binki Woi of Handicapped-Art-Works in Germany, Lady MJ Warrior in the United Kingdom and Ronnie Ronnie in Uganda. Along with various artists with disabilities from South Africa. Krip-Hop Nation has also just released a new album to mark the network’s tenth anniversary. Xóchitl Justice Press will publish Moore’s children’s book, titled Black Disabled Art History 101, later this year and Moore also recently published a collection of poetry titled Black Kripple Delivers Poetry & Lyrics.
As scholars and academics in a social science field like special education what—if anything—do we stand to learn from paying attention to the work of community activists and artistic visionaries like Leroy F. Moore Jr? How might Moore’s story resonate in relation to wicked problems like disproportionality and the representation of students of color in special education? How might public school curricula benefit from incorporating the tenets of the Krip-Hop Nation? Moore actively sought to engage in the learning process as a child in the public education system—he wanted to acquire knowledge. Yet he experienced nothing that spoke to his identities. Even within the Hip-Hop culture he grew up with and continues to embrace, he had to move beyond its able-bodied and exclusionary constructs of Black masculinity and create his own more equitable “nation” space. As students and professionals operating in a regressive and draconian political climate for public education, and as all the eyes in the country continue to navel-gaze on the shortcomings of the current president, what do we stand to gain from the tenets of Krip-Hop? We close this blog by pointing to Moore’s etymological definition of the term “Krip”as one possible answer to these questions—
The last but important concept of Krip-Hop Nation is the title. Why Krip with a K? Like I wrote above, Krip-Hop Nation is more than music and “bling bling”, it is about advocacy and education and taking back what has been taken from us to oppress us. Language…was taken from people with disabilities and the language was turned on us to oppress us. Before people with disabilities had civil rights, a movement and the Arts, many placed labels on us like “crazy”, “lame”, “cripple”, and “retarded” etc. Of course, now with our civil rights and disability studies and culture, we have named ourselves and have used the negative terms to our own benefit to not only shock people but to respect that these words are our history and we must reclaim them. After realizing that the term Crip has a long history of negativity in being used for Black gangs in L.A. (The Crips & The Bloods)…I wanted to again reclaim the term Crip to advocate and educate with a proud framework of the music and struggles of Hip-Hop artists with disabilities. Just like in Hip-Hop you turn something that the so-called mainstream has discarded with a fresh spotlight thus changing the C to a K in what we know today as Krip-Hop.
Leroy F. Moore Jr. is a Black writer, poet, Hip-Hop\music lover, community activist and feminist with a physical disability. He has been sharing his perspectives on identity, race and disability publicly for the last 13 years. His work began in London, England where he discovered the Black Disabled Movement which led to the creation of his lecture series titled, On the Outskirts: Race & Disability. Leroy is co-founder and former community relations director for the Sins Invalid performance project. Leroy is also one of the leading voices around police brutality and the wrongful incarceration of people with disabilities in the United States. In 2015 he helped to produce the documentary Where Is Hope, which centers on police brutality against people with disabilities. He is also the creator of Krip-Hop Nation and produced the Krip-Hop Mixtape Series. Leroy is currently writing a Krip-Hop book. In 2015, Poetic Matrix Press published his poetry collection, The Black Kripple Delivers Poetry & Lyrics, and he has also released poetry on CD including titles such as Black Disabled Man with a Big Mouth & A High I.Q. and The Black Kripple Delivers Krip Love Mixtape. In February, 2017 he released the Krip-Blues Stories on EP, and later this year he will publish his children’s book, Black Disabled Art History 101 with Xóchitl Justice Press.
Lorde, A. (2003). The master’s tools will never dismantle the master’s house. Feminist postcolonial theory: A reader, 25, 27.
Newman, M. (2005). Rap as literacy: A genre analysis of hip-hop ciphers. Text, 25(3), 399-436.