Grantmaking, Social Development

Grantmaking in the disability sector – “˜Nothing about us without us’

1 September 2011

Elinor Kern, CSI Practitioner at Tshikululu Social Investments, considers how social investors should approach their work in the disability sector  – in an inclusive partnership with the people they support.

“˜Nothing about us without us’ is an international disability slogan that encapsulates the importance of the inclusion of people with disabilities.

Until recently, much of the focus in disability sector work has been on the medical and individual implications for people living with disabilities, but this is a limiting approach and does not take into account their social needs. It is most commonly referred to as a “˜medical model’, which is not developmental in nature and it does not acknowledge the real needs of people with disability.

It could also more bluntly be called an “˜ag, shame’ approach, described in detail in an article by Kathleen McDougall in Disability and Social Change. This approach disempowers persons with disability by feeling sorry for them and by being patronising. This implies that they are not allowed or expected to make their own decisions and choices.

A result can be the isolation of people with disability from society and from mainstream activities. This unfortunately is often the case in South Africa.

The international alternative, which the South African government has also adopted, is called a “˜social model’ and it emphasises the shortcomings of society in respect of people with disabilities, while highlighting the abilities and capabilities of people with disabilities themselves.

The social model requires resources to be made available to transform amenities and services to cater for a more diverse environment. Hence, the environment – physical and social – is seen as disabled, not the person. To “˜enable’ people with disability, the physical and social environment must be made more accessible and accommodating of them. The social model embodies and attempts to live up to the slogan “˜nothing about us without us’.

What does this mean for funders?
According to the last census, 5% of the South African population has a disability. However, the disability sector estimates the actual figure to be closer to 10%. Sadly, this community is often marginalised and, for example, fewer than 5% of people with disabilities are employed on the open labour market.

The disability sector is under-resourced, under-funded and under-subsidised. Government policy is extremely progressive with regard to the rights of people with disabilities, but services, programmes, and funding are inadequate to meet their needs.

Clearly, interventions for people with disabilities should therefore be prioritised, and funding for such interventions should be viewed as a priority within funding entities.

It is worth remembering that the disability sector is a broad one, with diverse needs that vary from one community to another, and from urban to rural settings. A guiding principle in reviewing funding applications from disability organisations or other organisations is the social model approach, i.e.: how does the applicant organisation ensure that the interests of people with disabilities are represented and respected?

Possible questions for social investors to ask include:

• Are the interests of people with disabilities represented at organisational governance level? How many board members have a disability? Are there representatives from the disability sector on the applicant organisation’s board? Has the organisation looked into the possibility of training one of the beneficiaries to become a board member? If it is an organisation for people with severe to profound disabilities,, are parents/caregivers/family members present on the board?

• Are the interests of people with disabilities represented at management and staff levels? How many managers and staff members have a disability?

• Is the model of intervention a developmental model which respects the rights and dignity of its beneficiaries, and which includes beneficiaries at all levels?

• Does the funding application address key areas within the sector, such as accessibility, employment, quality of care and quality education?

In order to achieve disability equality and inclusion, mainstreaming should be embraced and implemented. This means not necessarily seeing the disability sector as a separate sector, but rather considering:

• Disability organisations working within a “˜mainstream’ certain sector (such as arts and culture) that specifically benefit people with disabilities.

• Requesting existing programme partners/mainstream NGOs to include people with disabilities in their programmatic activities. Specific funding may need to be made available to facilitate inclusion.

As valuable as mainstreaming is, it is important to not lose the interests of people with disabilities in mainstreaming, and to ensure that the focus is maintained. A disability specialist and/or a dedicated disability programme can ensure that the interests of people with disabilities are maintained within mainstreaming.

Finally, we should remember that language is important, and it is critical to ensure that stereotypes are not reinforced or that offensive terms are used. A person with a disability is a person first; they are not defined by their disability, and are not a victim of their disability. So, for example, “˜she has cerebral palsy’; “˜he uses a wheelchair’; she is blind or has a visual impairment’, not “˜she suffers from cerebral palsy’ etc.

If you would like to know more about these important language issues, order a copy of Sawubona Disability: Myths, Manners, Do’s and Don’ts about Disability from the QuadPara Association of South Africa for a comprehensive explanation on terms and terminology within the disability community, or download a copy in one of five languages here.