It was previously believed that disability was about health problems that limited people’s potential. Clear evidence now shows that it is mainly about societies like ours that, for no good reason, fail to provide basic access to the 10-15% of its population with physical, sensory, cognitive and psychiatric impairments.

Added to the baseline struggles of generalised underdevelopment, the result can be terrible suffering. Consider, for example, life in an informal settlement. For all, the poverty, lack of sanitation, exposure and scarcity of hope can be annihilating. Add to this, say, a severe physical impairment like quadriplegia. There is no accessible transportation to get one to somewhere to look for a job, let alone making it possible to keep one. And this is before meeting employer prejudice and inaccessible work environments. Proper sanitation is unavailable to all but means a daily grind of especially severe attacks on dignity for a physically impaired person.

Health care support is difficult to reach, under-resourced and often inappropriate.  Susceptibility to cold and infection presents constant threats to life. As a person with disability, one is many times more likely to be a victim of verbal, physical and sexual abuse. The lack of basic assistive services means that friends and family – if these are present – must be relied on for, literally, the means of life, often distorting and straining relationships.

I could say much more. In many parts of the world I have noticed a particular belief about disability: that people are “looked after” by “dedicated services” that “provide what they need”. Besides the dehumanizing paternalism implicit in this idea, it is, I’m afraid, just not true. Not at all.

As an academic and activist campaigning for disability civil rights, it’s clear to me that finding a voice amid oppression is the most important challenge. Biko taught us, just in time, that prejudice makes people silent, covering up injustices that rule their lives. So it was to my great my dismay that I read a press release in July by Disabled People South Africa (DPSA), saying that the organization has an “important role to play towards the ANC’s victory in the 2014 general elections”.

A meeting between DPSA and ANC delegations preceded the release, in which it was agreed that the voices of people with disabilities would be heard through representatives in Parliament. For this purpose, community members would be chosen as MPs, assuming their membership in the ANC. What was being communicated is that DPSA has chosen to formally reaffirm alignment of their organization, and by implication their constituency, with the ruling party.

Only a relatively small proportion of South Africa’s disability community belong to DPSA (or any disability organization), but as by far the predominant group it carries responsibility for broadly representing the community’s political interests. To those following the Cosatu wrangle about the position of Zwelinzima Vavi, the tension between party politics and real (that is protest) politics – and how the first can neutralize the second – will be familiar.

DPSA has a long, distinguished history as a civil rights organization. In fact, scholarly articles on the early years of the global disability movement mention it by name as a world leader. This was before democracy, at a time when the organization was deeply involved in the anti-Apartheid movement, finally achieving the triumph of inclusion of disability as a protected minority identity in our constitution.

But since 1994, South Africa’s disability movement has, sadly, lost its teeth. After some of its top leadership was drafted into government positions at the advent of democracy, DPSA has since shown little appetite for political action. This, it seems to me, represents a massive missed opportunity.

World experience shows that spreading political mobilisation among people with disabilities is hard. Many have taken in prejudices from their communities, health care workers, institutions and the media. The result is often an entrenched belief that one does not have a right to participate, to be educated, to work or to be a full citizen.

The mechanisms maintaining this inequality are legion and literally built into the living spaces, service protocols, cultural practices and, most of all, beliefs that are all we know.  Under the mind control of Apartheid, it was similarly hard for many to imagine a just solution, a different shape for our nation. The way out of this terrible inequality is through cultivating political awareness and self-advocacy – helping people to see injustice for what it is, and speak out. Everything, and everyone, must be open to interrogation, especially since oppression is often not easy to see clearly.

Silence is what keeps the world’s disabled population at the rock bottom of society. As South Africans we have thought quite a lot (though not nearly enough) about race and gender in relation to inequality; we haven’t started thinking about disability.

Observing the protesting voices of the TAC, Section 27 and others over the corrosion of health services in the Eastern Cape forced me to put pen to paper. In our country we have some of the world’s best examples of how political organisation and a refusal to sit down and shut up can change society. We overcame Apartheid; then the TAC defeated a government that was letting its people die. We have a history of street-level politics. It’s in our blood, and it’s a gift.

Given all the above, DPSA’s (to me) anti-political position is bewildering as well as deeply upsetting. The story of disability oppression everywhere has control at its centre.  It’s worth remembering that unequal access (to education, employment, independent living, freedom of choice and much else) is often framed as care or protection.

People with disabilities have been told how to behave, where they belong, what they are worth, what to believe and what to hope for. For the most part, these beliefs have fostered a sense of damage, exclusion and voicelessness – the sort that black consciousness writers told us we have to dislodge. Telling people with disabilities how to think (or, in fact, to not think) seems, ironically, like more control.

The work of disability development, in my view at least, is nurturing the ability to criticize: to know one’s rights and take action to make the state, one’s community, the ruling party – whoever – accountable. What grows in this peculiar South Africa is, at times, just the opposite.

Instead of demonstrating that criticism is possible, that rights are real, the message seems to be “be quiet, cooperate and … wait”. Wait. For a government that, despite its sprinkling of disability in high places, has as a whole performed miserably in this area so far.

I hear stories from the community level of people with disabilities being denied support because of their non-allegiance to the ruling party. Whether this is true or not (and I hope it isn’t) it is not difficult to see how a corrosive sanction on criticizing ruling party authority would and will reach down from national to local to community to street level. And then it will reach right inside.

For years I have yearned for large-scale protest action highlighting the absence of public transportation for most people with disabilities, the lack of media access for sensory impaired people, the chaos and neglect in many quarters of special education, the failure of government to meet its own employment equity quotas, the shocking under-representation of disability in higher education, among many, many other biting concerns.

But while civil society organizations are revving up, those tasked with representing the disability community are encouraging a sort of credulous political passivity.

A further part of DPSA’s stance involves making nothing of opportunities to develop alliances with other organizations fighting for the rights of oppressed groups. The social circumstances surrounding disability have much in common with those of the HIV/AIDS community, the LGBTI community, the landless people’s movement and other groupings, each of which has mobilized collective action through organizations which are at times critical of government.

The disability minority is a sizeable one. Were it to be organized effectively it would pack a significant political punch. Without this weighty constituency, but with political freedom, creativity and canny strategizing, the TAC is a stunning testament to what can be achieved. Theirs is a dynamic position, determined to squeeze every ounce of value out of the democracy we fought so hard for.

Like the HIV positive community, the disability community needs powerful leadership, loudly saying that all are entitled to participate, to be full citizens, to be outraged, to have needs, to feel whole and legitimate. In the coming decades this will mean taking issue with government. Let’s begin. DM

Dr Brian Watermeyer is a clinical psychologist and academic who has worked as a researcher and activist in the field of disability studies for the past 15 years. He has a disability (severely sight impaired). Watermeyer has published extensively in the disability studies discipline, including a range of articles in international journals, and two books. Dr Watermeyer is currently a research fellow at Stellenbosch University’s department of psychology.  In addition, he holds a private practice and consultancy, specializing in disability-related work (psychotherapy; parent counseling; organizational consultation; health practitioner training and supervision). He teaches on several postgraduate courses at Stellenbosch University, UCT and UWC, in clinical psychology, disability studies and rehabilitation science.