My Friends Can Call me "A Crip"-Do They?

My Friends Can Call Me “A Crip”-Do They?:
A Personal Perspective/Journey through
Disability Studies-Past, Present, and Future
Steven E. Brown, Ph.D.
Center on Disability Studies
University of Hawaii
May 2014
https://drive.google.com/file/d/0BxKh0bujKbdMYWk3bE56Q3Nwc0U/edit?usp=sharing
http://tinyurl.com/q9mqyom

“Crip: /krip/: person with a disability”
(Palacios, 2013)

“Experience with disability is a more ready
source of knowledge about the disability to
those who have it than to those who do not.”
(tenBroek, 1966, p. 917).

“For the Crime of Being Different”
“For the crime of being different for the crime of
being slow. For the crime of not quite fitting in,
we sentence you to go. (Moyer, 1988).

“For the Crime of Being Different”
For the crime of being different,
for the crime of being slow
For the crime of not quite fitting in,
we sentence you to go
Where you will be with others
who are also of your kind
Far, far away from city lights,
out of sight and out of mind.
There can be no discussion
Will be no appeal
You have no right of protest
No defense nor free man’s bail
and within the institution,
and away from prying eyes
Drugs and grinding tedium
will become a way of life.
Through the power of the people
and in the wisdom of the State
We sentence you to go away
and live your star-crossed fate
Perhaps in time these walls will fall,
these prisons will be shunned
But til that time this sentence stands
and the State's will shall be done.
For
the crime of being different,
for the crime of
being slow
For the crime of not quite fitting in,
we sentence you to go
Where you
will be with others
who are also of your kind

“People with disabilities have forged a group identity. We share a common
history of oppression and a common bond of resilience. We generate art, music,
literature, and other expressions of our lives, our culture, infused from our
experience of disability. Most importantly, we are proud of ourselves as people
with disabilities. We claim our disabilities with pride as part of our identity. We
are who we are: we are people with disabilities.” (Brown, 2003, pp. 80-81)

“If disability studies is to survive and grow, it needs to
open up to new perspectives, rethink orthodoxies,
engage with critiques, and generate new and better
accounts of disabled people's lives and the social
exclusion they face. Otherwise it will become
ghettoised and irrelevant, forfeiting power and
influence in the wider world.”
(Shakespeare, 2005. p. 146).

“Disabled people are peripheral everywhere.”
(Charlton, 2010, p. 195).

“Some people say that language is a trivial concern and the disability
rights movement has much more pressing issues to concentrate on.
There are indeed many significant disability issues which need our
advocacy and energy, and they include language. Language is
powerful. It structures our reality and influences our attitudes and
behavior. Words can empower, encourage, confuse, discriminate,
patronize, denigrate, inflame, start wars and bring about peace. Words
can elicit love and manifest hate, and can paint vivid and long lasting
pictures.” (Kailes, 2010, p. 4.)

Perhaps if I had the physique of a football player
I would have had the stamina to write this book,
but since my then 6’4,” 160 pound (at best)
frame did not resemble that of a football player,
I could not do the job.

That summer of 1982, I began volunteering everyday at the independent living
center and in the fall I successfully applied for one of two newly funded positions.
The issue of language immediately became apparent. There was a great debate
about the outdatedness of the word “handicapped” and a move instead to use
the word activists preferred: “disability.” A debate that advocates with disabilities
won by the time the 1990 Americans with Disabilities Act became law.

You may wonder at this point where is disability
studies? So did I. I knew about black studies,
women’s studies, and ethnic studies. Why not
disability studies? I learned of another historian
with a disability in Los Angeles by the name of Paul
Longmore. He was writing about disability and the
media.
I also learned about a medical sociologist
named Irving Kenneth Zola, who had been
instrumental in creating first, in 1982, the
Section for the Study of Chronic Illness,
Impairment, and Disability and then in 1986, re-
forming the group into the Society for Disability
Studies. (Society for Disability Studies, no date).

Disability Culture/Disability Studies

“Disability Studies reframes the study of disability
by focusing on it as a social phenomenon, social
construct, metaphor, and culture, utilizing a
minority group model. It examines ideas related to
disability in all forms of cultural representations and
throughout history, and examines the policies and
practices of all societies to understand the social,
rather than the physical or psychological,
determinants of the experience of disability.”
(Linton, 1994, p. 46)

PETBIA CHART
Developed by Steven E. Brown
PUBLIC EXPECTATIONS TRADITIONAL BELIEFS INDIVIDUAL ABILITIES
Getting around thehouse Walking (unlessspeaking of
ababy or an elderly person)
Walking, crawling, rolling, wheelchair,
scooter
Dressing & Grooming Hands, spouses Hands, feet, arms, legs, mouth, spouses,
adaptiveequipment
Preparing Meals & Eating Mouth, feet, and hands
(unlessspeaking of therich
who can afford to pay
someoneelseto do it)
Mouth, hands, feet, arms, adaptive
equipment,
Toileting/ Bathing
/ Showering
Hands(unlessspeaking of
therich who can afford to
pay someoneelseto assist)
Hands, arms, legs, feet, reachers, shower
chairs, spongebaths, roll-in showers
Doing Laundry
Hands, legs, drycleaners,
laundromats
Hands, legs, feet, wheelchairs,
drycleaners, laudromats
Taking Medications
Hands, brain Hands, brain, legs, feet, adapted
equipment
Using theTelephone Handsand mouth Hands, mouth, feet, arms, head, legs,
computer, speaker
Getting to PlacesBeyond
Walking Distance
Car, bus, train, plane, bicycle,
motorcycle
Car, bus, train, plane, bicycle, motorcycle
wheelchair, scooter,
Driving Handsand feet Hands, feet, mouth, arms, legs
Grocery Shopping Feet, hands Feet, hands, wheelchair, scooter, reachers
Managing Money Brain, hands Brain, hands, feet, mouth, legs, arms
Doing Housework or
Handyman Work
Doing it yourself or hiring
someoneelseto do it
Doing it yourself or hiring someoneelse
to do it
Childcare Doing it yourself or hiring
someoneelseto do it
Doing it yourself or hiring someoneelse
to do it
Sexual Aids Hands, mutual cooperation Hands, feet, arms, legs, mouth, mutual
cooperation
Sleeping Get into bed Get into bed

What is Disability according to the CRPD
 CRPD doesn’t include a definition of “disability” or
“persons with disabilities,” (PWD) but provides
guidance, such as:
 “disability is an evolving concept
 disability results from the interaction between persons
with impairments & attitudinal & environmental barriers
preventing full & effective participation in society on an
equal basis with others (Preamble)
 PWD “includes those who have long-term physical,
mental, intellectual or sensory impairments which in
interaction with various barriers may hinder their full and
effective participation in society on an equal basis with
others.” (Article 1)

One Disability Studies definition
“how disability is defined and represented in society…a construct
that finds its meaning within a social and cultural context….
Disability Studies challenges the way in which disability is
constructed in society
(Center on Human Policy, Law and Disability Studies, no date).

NEGATIVE STEREOTYPES and some
POSITIVE COUNTERPARTS
Weakness Strength
Sickness Wellness
Incapacity Ability
Isolation Peer Support
Alienation Identity
Institutionalization Integration
Oppression Resilience
Victimization Choice
Devaluation Pride
Inability to act "normally” New ways of doing things
http://www.instituteondisabilityculture.org/disability-culture-beginnings-a-fact-
sheet.html

Freedom of Movement: Independent Living History and
Philosophy (2000). Written in part with the upcoming
millennial year of 2000 in mind, I suggested several
desired predictions for the early 21st century. They will
be used here for a frame of reference to proceed:
http://www.ilru.org/html/publications/bookshelf/freedom_movement.pdf

Disabling conditions
1.“More and more disabling conditions will be
recognized as important to the independent
living movement [the focus of the monograph,
however, I believe these statements apply to
disability studies as well], such as people with
psychiatric disabilities, mental retardation,
multiple chemical sensitivities, AIDS, and new
conditions that arise” (p. 57).

Intellectual disabilities
Autism
Strives to be:
“queer, trans*, asexual, fat,
disability, gender, and sex positive;
anti-oppression, anti-imperialism,
and anti-racist; and inclusive of,
accessible to, and affirming of
all bodies/minds”
(Autistic Hoya, 2011-2014).
http://www.autistichoya.com
Lydia Brown

Aging
Death and Dying
http://www.journeytotheunknown.net/
Charmaine Crockett
Journey to the Unknown:
A Virtual Talking Circle on Death Dying

Disability Culture
2. “The recognition among more people with
disabilities and the mainstream population that
there is such a thing as Disability Culture, the
movement by people with disabilities to infuse
our own experiences into all aspects of everyday
life, as most easily seen now in books, movies,
music, and other expressions of art” (p. 57).

Identifying Disability Culture
When entering “disability culture”
Google Yahoo
43,700 April 9, 2008 280,000
59,400 June 23, 2008 347,000
64,600 Sept. 5, 2008 429,000
54,100 Oct. 29, 2008 286,000
49,300 March 21, 2009 384,000
58,500 Sept. 8, 2009 381,000
61,700 Feb. 13, 2010 296,000
43,900 Sept. 16, 2010 41,000,000
161,000 Jan. 22, 2011 39,500,000
12,900,000 Aug. 2, 2011 50,700,000
215,000 Sept. 4, 2011 68,900
104,000 Sept. 10, 2012 93,300
97,800 Sept. 7, 2013 **
74,800 March 8, 2014 76,300

Disability Culture: Examples
Beethoven’s Nightmare:
http://www.youtube.com/watch?v=2WkfI9GH_AI
Hiljmnijeta Apuk, Little People of Kosovo:
https://www.youtube.com/watch?v=veQ6w5ZR3Vc
Disability Pride Parade:
http://www.youtube.com/watch?v=mXAwfg0jgdU&feature=relatedWILD):
Loud, Proud and Passionate:
https://www.youtube.com/watch?v=uxxomUVsSik
Sean Forbes: “Let’s Mambo”:
http://www.youtube.com/watch?v=w2KYAlcTQno&feature=relmfu
Silver Scorpion:
http://www.scribd.com/doc/54720383/Silver-Scorpion

Using Disability Culture
How might knowing about or having examples of
disability culture be useful?
1. Explain why people with disabilities think our
culture is important.
2. Use examples to demonstrate disability rights,
history, talents and resources.

Media
3. “The importance of persuading the
mainstream media to understand our issues
from our perspective” (p. 57).

Images
https://www.google.com/search%3Fq="disabilit
y+culture"%26hl=en%26prmd=imvns%26source
=lnms%26tbm=isch%26sa=X%26ei=34NOULDdIc
vyyAG-
kYGQAg%26ved=0CAoQ_AUoAQ%26biw=1418%
26bih=802

Media dis&dat
“The media have real power to define what the public
knows about disability and that’s what I research.”
Beth Haller
http://media-dis-n-dat.blogspot.com/
Disability Advocacy through Media Training
Course
http://disabilitymediaadvocacy.wordpress.com/

Celebrations
4. “The national organizing for Initiative 2000 to
celebrate our lives and victories from the last
twenty-five years culminating with events
around the country on or about July 26, 2000,
the tenth anniversary of the signing of the ADA”
(p. 57).

ADA Legacy Project
“We envision a world in which all people are accepted and valued for who
and how they are: where all are welcomed with respect and given equal
opportunities to contribute to the human experience.
The mission of The ADA Legacy Project is to honor the contributions of people
with disabilities and their allies by:
preserving and promoting the history of the disability rights movement;
celebrating the impact of the Americans with Disabilities Act (ADA), as well as
other related disability rights legislation and accomplishments; and
educating the public to create opportunities for inclusion, access, and equal
rights for the future.
Preservation, celebration, and education: this is how we will honor this
historic civil rights legislation and create its legacy: a world in which every
citizen is accepted for who they are.”
http://adalegacy.org/

Disability Studies
“In 2015, Disability Studies Quarterly will publish a Special Issue to mark the
25th anniversary of the Americans with Disabilities Act. The ADA has been a
watershed in American disability policy, with far-reaching effects on the status of
Americans with disabilities, but has fallen far short of the expectations for
social transformation with which it was enacted in 1990. The Special Issue will
commemorate the ADA’s 25th anniversary with both a look back at how the
ADA has affected the disability community and the larger society, and an assessment of
future prospects for attaining the ADA’s goals of inclusion and empowerment.”
http://disstudies.org/publications/special-issue-ada Photo Credit: Courtesy of Tom Olin

Our History
5. “A comprehensive history of our movement
and it's importance written by one of us!” (pp.
57-58).

A Disability History of the United States
It is not comprehensive, as the author herself declares in her
Introduction, however it is an attempt to locate “the experiences of
people with disabilities at the center of the American story” (p. xi).

Bibliographic data for Slides 39 & 40
Bogdan, R., Elks, M. & Noll, J. A. (2012). Picturing disability:
Beggar, freak, citizen, and other photographic rhetoric. Syracuse.
Syracuse University.
Erevelles, N. (2011). Disability and difference in global contexts:
Enabling a transformative body politic. New York: Palgrave
Macmillan
Kafer, (2013). Feminist, Crip, Queer. Bloomington, IN: Indiana
University.
Longmore, P. & Umansky, L., eds. (2001). The new disability
history: American perspectives. New York: New York University.

Bibliographic data for Slides 39 & 40
(continued)
Nielsen, K. E. (2012). A disability history of the United States. Boston.
Beacon.
Pelka, F. (2012). What we have done: An oral history of the disability rights
movement. Amherst, MA: University of Massachusetts.
Samuels, E. J. (2014). Fantasies of identification: Disability, gender, race.
New York New York University.
Schweik, S. M. (2009). The Ugly Laws: Disability in public. New York: New
York University.
Smith, P. (ed.). (2013). Both sides of the table: Auto/ethnographies of
educators learning and teaching with/in [dis]ability. New York: Peter
Lang.

This is What Disability Looks Like
https://www.facebook.com/ThisIsWhatDisability
LooksLike/photos_stream

Technology
Tammy Duckworth
http://www.ted.com/talks/aimee
_mullins_prosthetic_aesthetics

Bio-ethics
Dr. Gregor Wolbring is an ability studies
scholar, biochemist and activist .
http://www.fixedthemovie.com/portfolio-
items/gregor-wolbring/
http://www.fixedthemovie.com

Social Media, global communication,
24/7 world: one example
“The Olimpias is an artists' collective and a
performance research series. The collective
explores art/life, cross-genre participatory
practices, arts for social change and disability
culture work.”
http://www.olimpias.org/

Krip Hop
http://www.poormagazine.org/
krip_hop
http://www.staffbendabilili.com/
“Krip Hop is a project
featuring people with
disabilities inside and
outside the music
industry, locally and
globally.”
Leroy Moore

Hip-Hop Hear This!
•
Hip-hop hear this!
introduced Crip-hip-hop
Now the industry is “Thumpin” on L.y.f.e’s., debut album, “Southern
Comfort”
the first Deaf Rapper & Producer
Teamed up with another Deaf emcee
Watch out for “Sho Me Who Rocs Betta: Chapter 1” by Sho Roc
Face on the turntables
Scratching with his chin
DJ Ectic has no use of his arms & legs
Getting the crowd up on their feet
His music swimming on sound waves across the ocean and sea
From the UK to the US

Hip-Hop Hear This! (continued)
“Hop Up On Your Good Foot”
C.R.I.S.I.S spits on Officer in Charge from Zambia
The rap celebrates people with disabilities
With upbeat West African hip-hop lyrics
Blues to hip-hop
Digging deep down to the roots
From 1887 to today
“Strut That Thing” sang Cripple Clarence Lofton back in the day
“Wheelchair Blues” by late Celeste White
Me, The Black Cripple, rhyming about “Identity”

Dancing to our own drum
Peg Leg Joshua Howell did the Peg Leg Stomp
and the Beaver Slide Rag in 1926
Peg Leg Sam Jackson did the Peg Leg dance in 1972
Ludacris brought back wheelchair square dancing
With a hip-hop flavor in 2005“when I move, you move just like that..
House it with Paul Johnson
“In Motion”
as the record spins
Lost his legs from diabetes
But his hands made him the funkiest
house dj in the business

Fezo Da Madone uses his feet
To drop nasty beats in the studio
“Here I AM”, his latest CD
Radical MC with Cerebral Palsy
Jive Records made history in the early eighties
Signing the first disabled musician
Brooklyn’s own Rob Da Noize Temple
35 years in the music industry
Now he is stepping out in front with “Peace Thang”

Hip-Hop hear this!
Cripple Connection Production
Slapping on a label
“Warning this purchase will shatter images”
messages wrapped in a plastic cd Jewell case
Hey Blackalicious, your Rhymes, are they a gift or a sin?
You say you have Rhymes for the deaf, dumb and blind
but all we hear is gab, gab, gab, gab your name fits Gift of Gab
Give us the mic welcome to crip-hip-hop rehab
Hip-hop in recovery taking speech therapy opening up a new positive
vocabulary
ripping a page from KRSOne Edutainment

Changing people’s backwards attitudes
Targeting the untapped disabled market
Distributors, agents, record companies, MTV & BET
Will pimp us as new kids on the block
But Cripple Connection Production is independent
Funding coming from our SSI benefits
Hip-Hop hear this!
Jay Z, sign our Ticket to Work
Puff Daddy and Flavor Flav, its time for a new Reality show
Called BADAS, Black And Disabled Artists Sharing
reporting inaccessible concert venues to the ADA police
The verdict please! Hip-hop hear this!
You’re out of compliance!
Leroy F. Moore Jr.
705

The Coming Decade--2015-2025:
Six Thoughts
1. Disability, or the concept of disability,
as well as disabling conditions will evolve. To my way of
thinking this is inevitable, because there is always a new
disability, or disabilities, on the horizon, that none of us
anticipates, such as AIDS or the change of thinking from
“mental retardation” to intellectual disability. It is likely
that one or more of these conditions, as well as
reflections on current disabilities, will change the way we
perceive disability.

Media
2. These perceptions and how we view disability
will be radically impacted by what we currently
call social media. Fifteen years ago, few if any
predicted Twitter, Facebook, LinkedIn, let alone
Instagram, Tumblr, Netflix, Youtube, Pinterest, or
Soundcloud; or print newspapers and magazines
giving way to online publications; self-publishing
or self-recording becoming a positive alternative
choice. The next decade is likely to see changes
just as radical.

24/7 Global World
3. Communicating instantaneously across the
world is not fantasy, it is reality that has changed
the way people communicate, work, and play. It
has made the world both a safer, and a more
dangerous place, for everyone, including
individuals with disabilities, who are more easily
able to engage, and therefore be more active as
well as more vulnerable at the same time.

Technology
4. Social media, and communicating in general,
have changed as technology has advanced and that,
too, will continue. For instance, robots are now
being used to assist children with disabilities to
attend classes where they cannot physically go, for
whatever reason (Chow, 2014). Prosthetics are
being used in ways previously unthinkable.
Wheelchairs are going underwater--next? While I
do not know what technologically is coming, I know
something is and it will radically alter our world.

Education/Disability Studies
5. Both education and disability studies will look different in the next
ten years. Education will finally include disability rights as part of its
curriculum from elementary to postsecondary schools. This will be, in
large part, because of the successes of the disability rights and
disability studies. But it will also be because disability scholars have
broadened our approach to include disability as part of the broader
world, and will be part of a global movement. This will enable us to
focus both specifically on disability, disability culture, and disability
studies from a lens that analyzes disability both in micro and macro
ways. Disability studies programs will increase, but so will disability
studies as part of other curricula.

CRPD and the U.S. Lags Behind
6. The U.S. will fall behind in the eyes of both the
world and our own advocates because the rest of
the world will adopt the U.N. Convention of the
Rights of Persons with Disabilities before we do and
whereas, the Americans with Disabilities Act
became known globally as inventive and forward-
thinking and had activists around the world lauding
the U.S., the opposite will happen as other
countries continue to precede the U.S. in ratifying
the CRPD.

Why We have Human Rights
“I have something very simple to say: We have
human rights for one reason and one reason
alone. We have human bodies.”
(Rains, Dec. 2013).

Student Comment-Spring 2014
Many of us may not realize it, but what language we
speak in, and also the words that we choose to use, play a
significant role in how we perceive the world. If there is
anything that I will remember from this class, it will be
that words have power, and we need understand that
although some terminology may be widely used, they
may not properly reflect a group of people, and could
even be offensive to those people. That is why I think that
our Kailes reading was so crucial: once we stop using such
misleading terms, we will unconsciously begin to destroy
some prevalent stereotypes about people with
disabilities.

Student Comment (continued)
It is also important to understand the reasoning
behind why reclaiming terms like "Crip" is crucial
as well. Reclaiming words allow communities
and groups to become empowered, and informs
people from the outside that they cannot use
these terms. I believe that using appropriate
language is one of the first steps in showing
respect for one another, and so I hope that more
people will become aware of this.

My Friends Can Call Me “A Crip”-Do They?

Usually, they just call me….Steve….but….if they want,
yes, they can because….I believe in:
Reclaiming, naming, power,
including power of/in words.
I will continue to try to unearth, claim,
and share that power and this word will suffice—
until something better comes along.
My Friends Can Call Me “A Crip”-Do They?

References
The ADA Legacy Project (2013). Retrieved from http://adalegacy.org/.
Americans With Disabilities Act of 1990, Pub. L. No. 101-336, §2, 104 Stat. 328 (1991).
Beethoven’s Nightmare. (2013). Retrieved from
http://www.beethovensnightmare.com/
Board Resource Center. (2013). Making complex ideas simple. Retrieved from
http://brcenter.org/hom_ideas.html.
Bogdan, R., Elks, M. & Noll, J. A. (2012). Picturing disability: Beggar, freak, citizen, and
other photographic rhetoric. Syracuse. Syracuse University.
Black, S., Bartlett, J. and Northen, M. (2011). Beauty is a verb: The new poetry of
disability. El Paso, TX: Cinco Puntos Press.
Braithwaite, J. and Mont, D. (2009). ALTER, European Journal of Disability Research,
3(3), pp. 219–232.

References (continued)
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Brown, S. E. (1994). Investigating a Culture of Disability: Final Report. Las Cruces, NM:
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Brown, S. E. (2003). Movie stars and sensuous scars: Essays on the journey from
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Chow, L. (March 20, 2014). When this sixth grader couldn’t go to school, a robot took
her place. NationSwell. Retrieved from http://www.nationswell.com/maddie-rarig-
robot-class/.

Crockett, C. (2014). Journey to the unknown: A virtual talking circle about
death and dying. Retrieved from http://www.journeytotheunknown.net/.
Erevelles, N. (2011). Disability and difference in global contexts: Enabling a
transformative body politic. New York: Palgrave Macmillan
Erevelles, N. and Minear, A. (2010). Unspeakable offenses: Untangling race
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Kailes, J. (Winter 1992). Aging with a disability: Educating myself. Generations: Journal
of the American Society on Aging, XVI(1), p. 75.
Kafer, A. (2013). Feminist, crip, queer. Bloomington, IN: Indiana University.
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NYU.
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pp. 44-46.
Little, L. (2010). Disability Pride Parade. Retrieved from
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