#HelpKrysBeatMS: My MS and Post-#HSCT Journey

chronic pain, disability justice, HSCT, Multiple Sclerosis, Uncategorized
Read, learn, and catch up on updates about my personal journey to #HaltMS below:

Disability Justice: Further Readings


I share the following links and resources as an introduction to contemporary writing and analysis by influential voices within Critical Disability Studies and the Disability Justice movement.

See also: Disability Justice: Resources for Educators & Organizers. – KMR

Critical Essays:

To Survive the Trumpocalypse, We Need Wild Disability Justice Dreams.” by Leah Lakshmi Piepzna-Samarasinha. Truthout (May 20 2018)

Disabled People Will Die Under Trump: An Emergency Plea to Allies.” by Carolyn Zaikowski. (Nov 18 2016)

Hands Up, Don’t Shoot!” by Jasbir Puar. The New Inquiry (Sep 15 2017)

“The normalization of disability as an empowered status purportedly recognized by the state is produced through the creation and sustaining of debilitation on a mass scale.”

The Age of Loneliness Is Killing Us.” by George Manbiot. The Guardian. (Oct 14 2014).

“Social isolation is as potent a cause of early death as smoking 15 cigarettes a day; loneliness, research suggests, is twice as deadly as obesity. Dementia, high blood pressure, alcoholism and accidents – all these, like depression, paranoia, anxiety and suicide, become more prevalent when connections are cut. We cannot cope alone.”

Dear Abled Friends: I Am Not Your Inspiration Porn.” by Karrie Higgins. Everyday Feminism. (Oct 5 2015)

Disability Rights Are Conspicuously Absent From The Women’s March Platform.” by Emily Ladau. (Jan 16 2017).

See also Disability March (https://disabilitymarch.com/), a virtual contingent to the Jan 2017 Women’s March on Washington.

The Right Not to Work: Power and Disability.” by Sunny Taylor (Mar 2004)

“You are SO Brave: Disability Studies vs Disability Justice at #SF41” by Krish Bhatt. (Mar 8 2016) (http://bcrw.barnard.edu/you-are-so-brave-disability-studies-vs-disability-justice-at-sf41/)


Blogs & News Sites Centering Disability

Leaving Evidence is a blog Mia Mingus, “a writer, educator and community organizer for disability justice and transformative justice.” She is a “queer physically disabled korean woman transracial and transnational adoptee from the Caribbean.”

Reflections on an Opening: Disability Justice and Creating Collective Access.” (Aug 23 2010) A reflection for the 2010 U.S. Social Forum, published by INCITE

Finding Each Other: Building Legacies of Belonging.” Keynote speech at KQTcon 2018, first national LGBTQ Korean conference in the U.S. (Apr 7 2018)

Medical Industrial Complex Visual

Changing the Framework: How our communities can go beyond access to wholeness

Crutches & Spice, a blog by Imani Barbarin, a Black woman with Cerebral Palsy who writes about science fiction and memoir.

Power Not Pity, a “podcast for disabled people of color everywhere…Through storytelling, commentary  and analysis, the podcast aims to amplify the lived experiences and perspectives of disabled people.”

Still My Revolution, a blog by A. J. Withers, “a disabled, queer and trans anti-poverty activist living in Toronto.”


Interviews (videos):

“Beyond Disability Rights; Disability Justice: Leah Lakshmi Piepzna-Samarasinha.” The Laura Flanders Show. (Jun 30 2015) https://www.youtube.com/watch?v=n_sw6Hjtfg8

“Mia Mingus on Disability Justice (interview).” Equitable Education. (Nov 30 2013) https://www.youtube.com/watch?v=3cJkUazW-jw

“Disability Justice Activists Look at “Ways to Maintain Ableism” and Counter “How Our Bodies Experience Trauma in the Medical-Industrial Complex.” Democracy Now! (Jun 23 2010) https://www.democracynow.org/2010/6/23/disability_justice_activists_look_at_ways

Includes interview with Stacey Milbern and Leah Lakshmi Piepzna-Samarasinha during the 2010 US Social Forum in Detroit, MI.


Academic Texts in Disability Studies:

Dan Goodley, Rebecca Lawthom & Katherine Runswick-Cole (2014) “Dis/ability and austerity: beyond work and slow death,” Disability & Society, 29:6, 980-984. https://doi.org/10.1080/09687599.2014.920125.

Dolmage, Jay Timothy. Academic Ableism: Disability and Higher Education. Ann Arbor, MI: University of Michigan Press, 2017. http://dx.doi.org/10.3998/mpub.9708722.

Kafer, Alison. Feminist, Queer, Crip. Indianapolis, IN: Indiana Univeristy Press, 2013. http://www.iupress.indiana.edu/product_info.php?products_id=806824

 Kim, Jina B. “Toward a Crip-of-Color Critique: Thinking with Minich’s “Enabling Whom?”,” Lateral 6.1 (2017).

 McRuer, Robert. Crip Times: Disability, Globalization, and Resistance. New York, NY: NYU Press, 2018.

McRuer, Robert. Crip Theory: Signs of Queerness and Disability. New York: NYU Press, 2006.

Mitchell, David T. The Biopolitics of Disability: Neoliberalism, Ablenationalism, and Peripheral Embodiment. Ann Arbor, MI: University of Michigan Press, 2015.

Puar, Jasbir. The Right to Maim: Debility, Capacity, Disability. Durham, NC: Duke University Press, 2017. (https://www.dukeupress.edu/the-right-to-maim)

Sandahl, Carrie. “Queering the Crip or Cripping the Queer?: Intersections of Queer and Crip Identities in Solo Autobiographical Performance,” GLQ: A Journal of Gay and Lesbian Studies 9, nos. 1-2 (2003): 25–26.

Schalk, Sami. “Coming to Claim Crip: Disidentification with/in Disability Studies.” Disability Studies Quarterly. Vol. 33, No. 2. (2013).


Disability Activist Organizations:

Disability Justice Collective (https://www.facebook.com/DJCollective)

A national collective centering the lives and leadership of disabled people of color, trans, queer, poverty class folks and all brilliance from the margins

Disability Visibility Project (https://disabilityvisibilityproject.com/)

DVP is “an online community dedicated to recording, amplifying, and sharing disability media and culture.” Founded & directed by Alice Wong, a disability activist, media maker, and consultant. Includes podcast with episodes on:

Disability Justice and Community Organizing

Invisible Disabilities

Disabled Refugees

Labor, Care Work, and Disabled Queer Femmes.”

Chronic Pain

Wong is also a co-partner in #CriptheVote movement encouraging political participation of people with disabilities. See also Wong’s article, “My Medicaid, My Life

Harriet Tubman Collective (https://harriettubmancollective.tumblr.com/)

See also Collective’s “Disability Solidarity: Completing the Vision for Black Lives.” Written as a constructive critique of the Black Lives Matter policy platform (as released August 1, 2016).

Invisible Disability Project (https://www.invisibledisabilityproject.org/)

Krip Hop Nation (http://www.poormagazine.org/krip_hop) is a project featuring people with disabilities inside and outside the music industry, locally and globally.

Sins Invalid (http://sinsinvalid.org/) is “a performance project on disability and sexuality that incubates and celebrates artists with disabilities, centralizing artists of color and queer and gender-variant artists as communities who have been historically marginalized from social discourse.”

Other organizations working on health care access & environmental justice:

Health Justice Commons (http://www.collabchange.org/health-justice-commons-link/). See their core principles in “Health Justice for Change-Makers and Healers”

ACT UP (http://www.actupny.org/), known for their direct actions during the height of the AIDS crisis.

Breast Cancer Action (https://www.bcaction.org/), a grassroots organization led by and supporting women living with breast cancer. Founded in 1990 by Elenore Pred, Susan Claymon, and Linda Reyes, it sought to address the root causes and environmental factors behind breast cancer incidents.

Disability Justice: Resources for Educators & Organizers


I share the following links and resources as an introduction to contemporary writings and analyses by influential voices within the Disability Justice movement & Critical Disability Studies.

See also: Disability Justice: Further Readings. – KMR

Disability Justice 101

Disability Justice.” POC Online Classroom. Includes articles and resources on ableism, disability justice, access & inclusion, state violence, and intersectionality.

 “Leaving Evidence,” a blog by Disability Justice activist, Mia Mingus.

What Disability Justice Has To Offer Social Justice.” by Theo Yang Copley. Grassroots Institute for Fundraising Training. (Nov 1 2011)

Disability Justice – a working draft” by Patty Berne. (Jun 10 2015)

10 Principles of Disability Justice” by Sins Invalid, “a performance project that incubates and celebrates artists with disabilities, centralizing artists of color and queer and gender-variant artists as communities who have been historically marginalized.”

The principles of #DisabilityJustice include: intersectionality; interdependence; collective access; leadership of the most impacted; commitment to cross-movement organizing; recognizing wholeness; sustainability; commitment to cross-disability solidarity; collective liberation.

Movement-Building Resources

26 Ways To Be In The Struggle Beyond The StreetsTikkun Magazine (Dec 18 2014)

‘A list of concrete ways our sick & disabled communities are [already] in the movement, and how we continue to support liberation every day. Created by fellow sick and disabled queer writers, artists, and activists of color, including Piper Andeson, Kay Ulanday Barrett, Ejeris Dixon, Ro Garrido, Emi Kane, Bhavana Nancherla, Deesha Narichania, Sabelo Narasimhan, Amir Rabiyah, and Meejin Richart.

9 Ways We Can Make Social Justice Movements Less Elitist and More Accessible.” by Kai Cheng Thom. Everyday Feminism. (Sep 27 2015)

Access Suggestions for Mobilizations” by Sins Invalid.

Suggestions for making actions & marches more accessible and intersectional, while also centering disability justice. (Jan 24 2017)

How to Make Your Social Justice Events Accessible to the Disability Community: A Checklist.” by s.e. smith. Rooted in Rights (Feb

Ableist Language” by autistic activist Lydia Brown. Includes a glossary of ableist terms—and non-ableist phrases that could be used instead.

How to an Ally to Disabled & Neurodiverse Folks in Activist & Academic Communities”. Access Culture (Jul 6 2012).

In the same blog, you can also find: “Disability & the Constant Threat of Isolation – How you may Knowingly & Unknowingly be Contributing to the Exclusion & Isolation of Disabled People.”

Some of Us Cannot Wait & See: 5 Thoughts on Undoing Ableism & Isolation In Your Community Spaces.” by Kay Ulanday Barrett. The Body Is Not An Apology (Apr 23 2018)

Be the Change: Six Disabled Activists on Why the Resistance Must be Accessible.” Autostraddle (Feb 13 2017) Includes interviews with Kay Ulanday Barrett, Sandy Ho, Leah Lakshmi Piepzna-Samarasinha, Angel Powell, s.e. smith, and Maria Town.

List of Readings on Disability Rights & Feminist Activism by FWD/(feminists with disabilities) for a way forward.

Blogs & Personal Sites on Disability Justice

Please consider supporting these incredible disabled writers of color with a Patreon donation!

Brown Star Girl, the website of Leah Lakshmi Piepzna-Samarasinha, a “queer disabled femme writer, organizer, performance artist and educator.”

Leah is also the author of the recently released Care Work: Dreaming Disability Justice (2018).

Crutches & Spice by Imani Barbarin, a Black woman & blogger with Cerebral Palsy.

Krip-Hop Nation, led by Black disabled writer & artist Leroy Moore.

Power Not Pity, a podcast moderated by Bri, a “Black, Jamaican-American, queer, non-binary, disabled alien-prince from The Bronx.”

Power Not Pity is a space where one “explore[s] the lives of disabled people of color everywhere. Through storytelling, commentary and analysis, the podcast aims to amplify the lived experiences and perspectives of disabled people.”

Bri is a fellow #MSWarrior and a good friend of mine, now living in Brooklyn.

Ramp Your Voice!, founded & led by Vilissa Thompson.

Ramp Your Voice! is “a self-advocacy and empowerment movement for people with disabilities”

Also check out the Black Disabled Woman Syllabus to up your intersectionality game! #BDWSyllabus

The Body Is Not An Apology, founded & led by Sonya Renee Taylor.

The Body Is Not An Apology is “an international movement committed to cultivating global Radical Self Love and Body Empowerment. We believe that discrimination, social inequality, and injustice are manifestations of our inability to make peace with the body, our own and others. Through information dissemination, personal and social transformation projects and community building, The Body is Not An Apology fosters global, radical, unapologetic self love which translates to radical human love and action in service toward a more just, equitable and compassionate world.”


Stem Cell Treatment for MS – Latest Stories & Research


University & Non-Profit Research on Stem Cell Transplantation (HSCT) for MS

National Multiple Sclerosis Society pages on HSCT:

Northwestern University (Mar 2015):Stem Cell Therapy Shows Promise for MS Patients.”

Ottawa Hospital (Jun 2016): “Can a new immune system halt MS and allow repair?

News Articles on HSCT for MS:

Older HSCT Fundraisers:


Published Research Articles:

See also: PDF copies of published research studies on bone marrow stem cell transplantation (or HSCT) for MS. Link will re-direct to a Google Drive folder.


Going to the Southern Mexican Border


Originally posted in Deconstructing Chris! (Jun 6, 2015): https://deconstructingchris.wordpress.com/2015/06/06/going-to-the-southern-mexican-border/

Long thought of as the “forgotten” border, the political division between Mexico and Central America is about a 714 mi (1149km) stretch of mostly sparsely populated land—about a third the size of the more (in)famous northern border.

About three-quarters of the southern border is shared with Guatemala, and the highest percentage of that is shared with Chiapas specifically.

For a good part of this month (June 2015), I’ll be staying in the border city of Tapachula to study both the militarization of the border and its impact on this growing city. Located in the incredibly fertile Soconusco region along the Pacific Ocean, Tapachula is the largest city in the border zone, and is currently the second largest city of Chiapas (after that state’s capital, Tuxtla Gutiérrez).

Some other facts and figures relating to Tapachula, Chiapas, and the militarization of the southern border:

Central American Migration

  • Over a century of U.S. imperialism in Central America, a brutal period of civil wars in the 1980s, and a continued legacy of government corruption in the region’s Northern Triangle (as witnessed by this year’s large mobilizations in Guatemalaand Honduras), continues to prop a humanitarian crisis whose roots are left untouched on all sides of national borders.
  • The most-trafficked route for Central American migrants on their way through México has historically begun in Tapachula. (This was highlighted in the acclaimed film about the treacherous northward journey, Sin Nombre (2009).)

Mexico’s Involvement

  • Tapachula has the notorious distinction of being home to Latin America’s largest detention facility—the euphemistically-named Estación Migratoria Siglo XXI (“21st Century Immigration Station”).
  • While Chiapas isn’t new to militarization—as those who are familiar with the Zapatista revolution are very much aware—the focus on the southern border has resulted in an increase in the number of checkpoints and roadblocks with a concomitant rise in human rights abuses.
  • Last year (2014), Mexican president Peña Nieto launched the Programa Frontera Sur –a program purportedly aimed at “protecting” migrants and boosting security that has, in actuality, has done little more than increase migrant “huntings” and deportations.[i]
  • According to a report released by the NGO Washington Office on Latin America (WOLA), Chiapas was the Mexican state with the largest number of deportations in 2013 (32,452)[ii]. This has likely increased by several thousands since since the start of the Frontera Sur program.[iii]

United States’ Involvement

  • Responding to the growing number of Central American migrants, the U.S. Department of Defense quietly launched a “Mexico-Guatemala-Belize Border Region Program,” with as much as $50 million of counter-drug money being spent on “patrol boats, night vision equipment, communications equipment, maritime sensors, and associated training.” This is in addition to the billions already funneled to the Mexican government since 2008 by way of the Mérida Initiative[iv].
  • WOLA’s report also details how the U.S. Immigration and Customs Enforcement (ICE) holds an office in Tapachula, supposedly “to build capacity in the identification of aliens from countries of national security concern.”

An image of the Usumacinta River, between Chiapas and Guatemala. Photo by thelmadatter http://commons.wikimedia.org/wiki/User:Thelmadatter Licensed under CC by 3.0

[i] http://www.animalpolitico.com/2015/04/programa-frontera-sur-el-discurso-de-derechos-humanos-con-el-que-mexico-caza-a-miles-de-migrantes/

[ii] Washington Office on Latin America (WOLA), 2014: http://www.wola.org/publications/mexicos_other_border

[iii] http://www.latimes.com/world/mexico-americas/la-fg-mexico-migrants-crackdown-20140907-story.html#page=1

[iv] Federation of American Scientists, 2015: https://www.fas.org/sgp/crs/row/R41349.pdf