Global mental health through a disability lens: opportunities and pitfalls Leslie Swartz Department of Psychology Stellenbosch University.

Global mental health through a disability lens: opportunities and pitfalls

Leslie SwartzDepartment of Psychology

Stellenbosch University

Global mental health has ‘come of age’

Patel & Prince, JAMA, 2010:• Inspiration from Treatment Action Campaign in

South Africa• “search for a better understanding of the causes of

mental disorders and affordable and effective treatments is of importance to improving the lives of individuals living with these disorders in all countries. This is the ultimate goal of global mental health” (p.1977).

Tomlinson & Lund’s (2012) suggested agenda

1. Greater community cohesion and international governance structures

2. A common framework of integrated innovation to ensure that global mental health speaks in the language of national and international policy makers

3. A coherent evidence base for scalable interventions that can be shown to have an impact at the structural level—on economic development and human well-being

4. A social justice and human rights approach is important.

5. Current innovative strategies for addressing stigma need to be evaluated and expanded.

United Nations Convention on The Rights of Persons with Disabilities

(UNCRPD)From the Preamble• …disability is an evolving concept….disability results from the

interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others

From Article 1• Persons with disabilities include 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.

Models of disability

• Medical model• Social model• Human rights model• Capabilities model

Etc…

Medical model

• Locates disability in the body of the ‘sufferer’

• Severity of disability linked to amount of physical pathology

• Sees the role of work in the area of disability as alleviating and relieving distress – disability as pathology

Medical model (2)

• The medical model is seen as:– Welfarist– Patronising– Controlled by able bodied– Excluding disabled people from power– Contributing to human rights abuses

Social model

• Move from bodily impairment to disability• Contextual• Environmental facilitators and barriers• Impairment alone disability• Human rights, participation, inclusion• Locates disablement in societal barriers to the

extent that ‘Society is disabled’ (SAHRC)

Social model (2)

• Implies different processes in decision-making – e.g. ‘nothing about us without us’

• Consultation models wrest expertise from professionals to disabled people – foregrounding of ‘insider knowledge’

• Legitimacy issues for professionals – ‘who may speak for whom?’

• Focus on accommodation and participation rather than ‘treatment’

• Rejects the ‘personal tragedy theory’ of disability

The argument against treatment

• Conductive therapy assumes that people with cerebral palsy (like me) can somehow learn to overcome our movement difficulties through repeating the same tasks over and over again. So rather than adapt our homes, transport, and equipment to be accessible, we ourselves must learn to adapt. But personally speaking, I'd rather have my accessible bungalow any day of the week (Clark, 2007).

• What’s so wonderful about walking? (Oliver, 2004)

International Classification of Functioning, Disability and Health

(ICF) • impairments are problems in body function or

alterations in body structure – for example, paralysis or blindness;

• activity limitations are difficulties in executing activities – for example, walking or eating;

• participation restrictions are problems with involvement in any area of life – for example, facing discrimination in employment or transportation.

(Highly influential in World Report on Disability 2011)

PANUSP: Cape Town Declaration 2012

From the preamble• The name of the organization was changed to The Pan African

Network of People with Psychosocial Disabilities as recognition that “users and survivors of psychiatry” does not adequately reflect representation and the lived reality of this voiceless group in Africa.

From the declaration• There can be no mental health without our expertise. We are

the knowers and yet we remain the untapped resource in mental health care. We are the experts. We want to be listened to and to fully participate in our life decisions. We must be the masters of our life journeys.

Three stories

• “I may be disabled but….”• “We would if they could but they can’t”• “Incapacity and human rights violations – or:

words, words, words”

Back to the UNCRPD (or: use those words smartly)

Two useful concepts/buzz terms for Global Mental Health

Reasonable accommodation:necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms;

Universal design:the design of products, environments, programmes and services to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design. “Universal design” shall not exclude assistive devices for particular groups of persons with disabilities where this is needed. (cf Max-Neef’s synergistic satisfiers)

Back to the UNCRPD 2(or: health is ok if you talk smartly)

Article 25 - HealthStates Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation. In particular, States Parties shall:

a. Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes;

b. Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and older persons;

Back to the UNCRPD 3obligations to states

Some useful concepts/issues from disability studies

• Misfits (Garland-Thomson, 2011)

• Ethics of care (Kittay, Tronto, feminist disability studies)

Engaging with the disability sector

• Nothing about us without us• User leadership• What can global mental health offer the

disability sector?

The role of professionals and researchers

• ‘On top’ vs ‘on tap’?

• (Dis) owning expertise and power?

• Engaging differently?

• User-led research

Some interesting challenges

• Stretching metaphors• The mainstreaming dilemma (waving and

drowning)• Trivialising for the sake of a common agenda

BUT

• Engagement requires re-examination of what we do

Disability questions No Some A lot UnableDo you have difficulty seeing, even if wearing glasses? 1 2 3 4

Do you have difficulty hearing, even if using a hearing aid? 1 2 3 4

Do you have difficulty walking or climbing steps? 1 2 3 4

Do you have difficulty remembering or concentrating? 1 2 3 4

Do you have difficulty with self-care such as washing all over or dressing? 1 2 3 4

Using your usual (customary) language, do you have difficulty communicating for example understanding or being understood?

1 2 3 4

Do you have a problem with nerves, sadness or depression? 1 2 3 4

Do you have a problem performing tasks that are expected of people of your age? 1 2 3 4

The triangle of engagement

Empirical research (what’s going on?)

Activism (how do we change things?)

Faith (What keeps us going?)

Concluding thoughts

• The limits of an ideology of independence (faith, ubuntu)

• (Inter)dependency and what it means to be human (Kittay)

• Building communities of practice across divides

• Faith and the long haul