September 23, 2019

Cross-Disability Perspective to the #WhatWENeed Campaign

Author: Shivani Gupta

Shivani Gupta

Cross-disability perspective to the WhatWeNeed campaign by Shivani Gupta

I am a person with a disability working as a cross-disability advocate and am also pursuing a PhD around support structures available to persons with high support needs living in rural communities in India. With very limited knowledge of psychosocial disabilities, I was fortunate to associate closely with TCI Asia Pacific [1] and understand the discrimination that persons with psychosocial disabilities face in their daily lives within their homes and communities. It was not so much the intense nature of discrimination that they faced that struck my interest but the strategies for inclusion that they advocated for. I see these as strategies that would benefit all persons with disabilities, especially those having high support needs. In this blog, I share my personal thoughts on those similarities.

Persons with psychosocial disabilities having the right to live and participate in one’s community is the key outcome we are aspiring for through different avenues such as the Global Mental Health Summit. However, the approach in which this is addressed is what makes a significant impact on the lives of persons with psychosocial disabilities. And according to me, the approach proposed and advocated for by TCI Asia Pacific would not only promote inclusion of persons with psychosocial disabilities in a manner that upholds their human rights but can be adopted also for a more sustained inclusion of persons with disabilities at large. 

The key is in transforming our communities in a way that they are more inclusive, and to fulfill this, combating institutionalization, creating more supportive communities, creating non-medical support systems in their communities, help in maintaining good mental and physical health.[2] These are also the demands of all other disability groups especially for persons who require a high level of support for daily living and participation who face similar levels of discrimination and may benefit from interventions demanded for by persons with psychological disabilities.

Institutional arrangements have been seen as an easy option to provide for most governments when addressing not only persons with psychological disabilities, but also persons who require high support in daily living and for persons without a family. De-institutionalisation and advocating against creating new institutions is big on the agenda for persons with psychological disabilities. But, de-institutionalisation is an issue even for persons with high support needs where again the government sees institutional care as an easy way out. They too would benefit from the government focusing on better support systems within their community. In addition, focusing on making the mainstream community services inclusive would not only reduce the amount of care required by individuals with disabilities but also increase their social capital and participation thus enabling them to lead a life they desire.[3] 

The social stigma that exists against persons with psychosocial disabilities and against persons requiring high support in daily living is comparable especially in low and middle-income countries. This stigma is fueled by their isolation and absence of meaningful social connections. For instance, it is common for families to chain persons with psychological disabilities outside the house or in a remote corner out of fear from them not allowing any form of participation to the person.[4] For persons with high support needs often the lack of adequate support available to them makes it impossible for them to become economically contributing and they remain dependent on the family all their life. This makes them to be seen as a burden and are left isolated within their homes again with no participation and limited interaction with the community.[5]

Families are the main support or care provider especially in LMIC where formal support systems are not as well developed. There are hardly any initiatives or programs that provide any kind of support to this invisible and unacknowledged workforce. Most often they provide care and support to the disabled family member without any formal know-how and without any respite making the entire experience extremely difficult with social, economic and health repercussions on them.[6] Such a situation is not only difficult for the family but also for the person with disabilities they are caring for who doesn’t receive the kind of care and support they require making them incapable of participation.

Further, research shows that persons with high support needs who require care and support on long-term bases for daily living and those providing them with this care and support, often suffer from depression and mental health issues which remain completely unaddressed. Alternative support practices used for persons with psychological disabilities such as the formation of peer support groups, art-based therapies can be as effective for persons living with long-term care needs and for their caregivers who are mostly family members. 

Therefore, to sum up, I would like to propose that the #WhatWeNeed campaign may be looked at not just in isolation in reframing the debate towards psychological disabilities but should be looked at as having a much larger scope of impact on the discussions and planning for lives of many other disability constituencies.


References

[1] TCI Asia Pacific website: http://tci-asia.org/aboutus.html

[2] General comment on article 19: https://www.ohchr.org/Documents/HRBodies/CRPD/CRPD.C.18.R.1-ENG.docx

[3] Sen, A.K. 1999. Development as Freedom. New York: Alfred A Knope. Inc. 

[4] Video by Human Rights Watch: https://www.hrw.org/news/2018/10/02/witness-shackled-years-now-free 
fbclid=IwAR0jIU25BPuV_Ck5Ci4__J8SdJgaBGoxWqLw31bVoTT_r_-6ed-AN_rdXo8

[5] Klasing, I. 2007. Disability and social exclusion in rural India. New Delhi: Rawat Publication. 

[6] A video by Carers Worldwide: https://www.youtube.com/watch?v=Rjgkicr-ZTY

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