MULTICULTURALISM AND DISABILITY - A PARTNERSHIP IN OPPRESSION NACDD Annual Conference 2015 Sparks, NV Graham Mulholland, Executive Director Karen Reed,

MULTICULTURALISM AND DISABILITY - A PARTNERSHIP IN OPPRESSION

NACDD Annual Conference 2015

Sparks, NV

Graham Mulholland, Executive Director

Karen Reed, Project Officer

Dana Thompson, Project Officer

Or…

• How we went from being a model of multicultural expertise to a model of angry incapacity in just five years.

Introduction (or) Our Recovery Model

• How• One Very Small Attitudinal Change• Understandable only in Context• Has had Huge Ramifications for our Council and its

thinking

• started on this journey 17 years ago:• had a minority outreach work group• A multicultural outreach work group• A multicultural diversity work group• And a diversity work group

We…

We Also…• produced a Paving The Way Toolkit• evaluated the cultural competence of our grantees• evaluated the cultural competence of our Council• got the Council membership up to double the minority

participation our population would suggest

Then We…• did outreach grants• did access grants• did mini grants• did minority outreach grants• gave grants to people who didn‘t think the way we think• gave grants to people who didn't share our standards• gave grants to people who didn’t share our values

In The End

• It was not clear to whom to give grants• Sometimes our projects seemed to end without follow

through• Our efforts have never been picked up by Council as a

whole• There was no clear Council mandate for this work• Many people nodded their enthusiasm into their cell

phones

• It was very hard to think about• We didn’t like people who just don’t think the way we think• Or follow rules and regulations• We kept changing our name, and • There was very little support for multicultural projects in

the planning of the last five year plan, and• Our peculiar experiment looked like it was coming to an

end

It Kind Of Seemed Like• The definition of Cultural Competence, for many people

rooted in the dominant culture, was

• A bunch of Black people doing something in a corner

• (that we don’t need to worry about)

The Beginning of the End• Came when some of us realized that, sitting in our

statement of values, was the vital notion that

• Disability Competence = Cultural Competence

• That how we address disability determines the way we address “cultural competence”

• And that we were on the cusp of a new way of addressing disability

Precursors

1. Generic Social Change

2. Stigma

3. Social Constructs and Cultural Change, and

4. (Eventually) Cultural Competence

ALL THESE THINGS…

• …ARE ABOUT CHANGING THE ATTITUDES AND BEHAVIOR OF THE DOMINANT CULTURE

• (This is a Theme)

GENERIC CHANGEAn Emerging Model

GENERIC CHANGE• Generic Change, in our thinking, has two parts:

• 1) people should live, work and benefit in generic settings and situations (The CMS Rule), and

• 2) sometimes it is the generic system, and not the person with the disability, which needs to do the changing (The Generic Social Change Rule)

Generic Implementations

EducationEmployment Health Housing Stigma

Faith ParticipationEarly Education TransportationLeaders Development

Recreation

The Common Theme

Our Generic Social Change Model is an attempt to find ways to achieve change for people who are seen as different, not by changing the people, but by changing the settings in which they live, work, play and worship.

This has implications for our relationships with others who seek change in the dominant culture rather than acceptance and adaptation

Stigma

Stigma – Our Experience• Has been a long struggle to find the right provider and the

right values

• Suffered from the idea that “exposure equals acceptance”

• Suffered from the suffocating effects of the paternalism model

• Suffered from the notion of “inspirational porn” – the idea that high “achievers” in the dominant culture would lead to the acceptance of an entire disability sub-culture

Stigma, continued• Came to the conclusion that the need for change lies in

the general public and not the person with the disability

• Encourages the stigmatizer to think about how they think.

• Is another example of fixing the broader culture (the regular, generic, dominant, modernistic culture) rather than fixing the people whom God made different

• …and She doesn’t make mistakes

Social Constructs

Social Constructs in Disability

• DSM5 versus ICD9• DSM5 versus DSM4• What insurance companies will pay for• Mental Illness and Mental Health change over place and

time• AAMR definitions of MR• Alcohol Abuse• Failures of attempts to break down silos• Autism growth• Developmental Disabilities• Corrective Measures

MI examples • Mental Illness in US 27%• Mental Illness in Belgium 12%• Anxiety Disorders in US 18%• Anxiety Disorders in Shanghai 2.4%• Mental Illness in US 27%, or• Mental Illness in US 6%

In Fact, There May be no Such Thing as Disability at all

• Disability is a social construct created by the temporarily able-bodied, the current participants in the dominant culture, and the allegedly sane

Racial and Ethnic Social Constructs • Race and ethnicity are defined by the actions of

governments and other dominant cultures

• We are surrounded by social constructs which define us, often against our will. Whether it is our disability and the danger that comes from our disability, or the danger that comes from being of the wrong race in the wrong place, or views of our employability, we are surrounded by social constructs.

• We share this oppression with our allies in other oppressed racial, ethnic, income or sexuality groupings.

• We can learn from each other.

So…

• The dominant culture has created social constructs to define and stigmatize people who are seen as • Disabled • Racially, ethnically, economically and sexually different, and• Mentally ill

• We need to stand together in defiance of our construction by the dominant culture and work together to create alternative definitions of reality

• We need to change, not ourselves, but the dominant culture

Diversity/Multiculturalism (at last!)

• Our Values Statements include:• Cultural Competence. The Council believes that the

skills involved in understanding disability (generic social change) are closely related to the skills which lead to other forms of cultural competence. We believe that disability competence cannot take place in isolation from the embrace of all human diversity (a natural part of the human condition). Therefore we seek alliances with all those who are excluded or dispossessed (by social constructs) on the grounds of poverty, race, ethnicity or sexuality.

VALUES STATEMENT

• The values statement seems to say that there is such a thing as disability competence

• And that our understanding of disability culture, and the strategies we use to overcome disability oppression, is somehow related to the skills and situations of other oppressed groups

WHAT THE VALUES STATEMENT MEANS?

And therefore our task is

• to form mutual understandings with other oppressed cultures,

• To learn strategies from them (including strategies for

living in multiple cultures), and

• To form partnerships with them in their struggles (as co-equals in opposition to the dominant culture)

• People with disabilities are the largest minority group in the country

• We have been subject to institutionalization, eugenics, experimental surgery, oppression, exclusion, devaluation, electric shock therapy, sterilization, selective abortion and stigmatization

• Even when other oppressed groups are stigmatized, they have been stigmatized in the language of disability and deformity

“Partners in Oppression”

• We are an oppressed group and share the experience of oppression and social deconstruction with the racially, ethnically, economically and sexually oppressed

• We are the allies of other “minority” groups, rather than the paternalistic dispenser of grants and support to them as if we are their moral and cultural superiors

• We share a stand in opposition to the Dominant Culture

• As in so much of our work, the target of change is not the “minority culture”, but the world in which that culture must live

Therefore…?

• Disability culture is not identifiable by any shared characteristic, other than rejection by the dominant culture as worthless, pitiful, dangerous and devalued. It is a social construct which parallels the social constructs around race, ethnicity and sexuality.

• And just as we act as a single disability culture, even although it is a creation of the dominant culture, so we must act as a single alliance of the oppressed, sharing a common history and a common need for self assertion, acceptance and liberation

• We are created, all of us, variously oppressed, by a three hundred year dominance of Modernism in America; the view that there is a single correct way to be, which should be conformed to by all, implemented by force if necessary, according to their different hierarchies, rather than embracing the value of diversity

The Connection

Connection continued…• If you understand the work of DD Councils as changing

the people on the other side of the interface between people with disabilities and the rest of the world, and preserving the right of disability cultures to be recognized by the rest of society as equally valid as the dominant culture, then it seems impossible to do other than enter into partnerships with those who seek equally to have their cultures, traditions and selves recognized as valid by the dominant culture and its members.

Define “Modernism”…• (Two Points)

What to Do?• Stop dispensing “largesse” – handing over goodies to

keep people quiet• Stop acting in a corner• Ensure the diversity agenda is common to all of Council’s

work• Change attitudes• Make alliances• Respect everyone’s right to be different

• At the very least we should try to view our grantees as partners in the struggle of the oppressed, rather than treat them as oppressors who need to be taught by us, through imposed training and programs, how to interact with other oppressed groups as dominants rather than as partners

• Our grantees need to view themselves as part of a liberation struggle, even if their local dynamics do not identify anyone other than disabled people as part of the oppressed. This stuff is no longer about ethnicity and race.

More To Do…

• Stigma• Communications and Publications• Policy Information Exchange• All of Council

Rewiring The Council

Intended Consequences• Anti-Paternalism Attitudinal Change on part of Grantees• Structural Change for MCD Work Group• MCD Work Group becomes the Diversity (or Other) Work

Group• Diversity group assumes leadership position on par with

Evaluation, PIE and Communications work Groups• Change in small grant program• Disparities Grants (not paternalism or inspirational porn)• Large Grant Creation/initiation• School to Prison Pipeline, and• Forced Change in Council Mainstream• Conversations/Alliances

• Meet with other minority groups

• Learn from other groups not as the guilty but as partners in a common struggle

• Ally ourselves with the struggles of other oppressed groups

• Seek out oppressed groups who struggle with the disability system and support them in their efforts at redefinition and re-understanding of the way the system works.

MORE TO DO…

We need to take:

• The target of change derived from our work in Generic Social Change

• The target of our work as discovered by our work in Stigma

• Our understanding of Social Constructs• Our co-extensiveness with other oppressed groups

discovered in our work in multiculturalism• Our rejection of the “exposure” model• Our rejection of the “institutional porn” model

• And put them together to get something like this:

Mission Statement?• We are a group of oppressed peoples, allies of other

oppressed peoples, who reject the construct that we are broken and devalued, and choose instead to assert our own worth and stand ready to change the dominant culture, its behavior and its expectations

• In this way we challenge the cultural expectations of the larger society while providing benefits for people with disabilities.

• The core of the work is to find ways to make the change that needs to occur at the interface, occur on more than one side of the line

• It requires adaptation, acceptance and redefinition by the dominant culture

More Than This…• We should ensure that we are structured so that there is an

integration in model and practice of all these related parts of Council’s work. This will take careful planning

• Relatedly, we should make sure that none of this work rests in an organizational “ghetto” where its influence is not imbued in all of Council’s work.

• None of our work should “fix” poor, broken disabled people

• None of our work should “fix” poor, broken “minority” people

Discussion