30 Years and the struggle continues

After more than three decades in the disability sector, ARI SEIRLIS reflects on how people with mobility impairments are still disadvantaged and overlooked

I was injured in a diving accident 37 years ago, which transformed me from an able- bodied active person in an accepting society to a wheelchair user with quadriplegia in an inaccessible environment with a ruthless and ignorant society.

I knew at the time of discharge from hospital that I would have to cope with being a wheelchair user. The reality didn’t seem too harsh if you accept that the greatest challenge would be the inability to walk again; and any other medical and health complications that come with a spinal cord injury (SCI).

Well, that was the message communicated to me as a farewell from the rehabilitation staff. At the time, that’s all they knew for their forewarning. Life with a SCI has its challenges and inconveniences, which can be dealt with by being able to access the correct equipment, assistive devices, mobility aids and prevention strategies for any collateral health issues.

However, life in South Africa as a person with a disability has challenges that are not so easily resolved. Politically, we have moved in leaps and bounds since 1992, but, in reality, people with disabilities seem no better off. The window is dressed, but the mannequins displayed remain immobile – that is the reality in South Africa in 2022 … 30 years on.

Let me explain, and to do so I must state that I am reflecting only on the issues and lifestyle impact of a wheelchair user in 2022. We are the minority compared to some other disabilities in terms of numbers.

To respect the challenges faced by all people with disabilities whoever they may be, the only advantage of being a wheelchair user is that you are clearly identified by your hardware. That can give you a competitive advantage in the space of avoiding harsh discrimination. People with invisible disabilities suffer greatly and, if my utterings help their journey by just an iota, I will have achieved something.

In 1985, almost immediately after discharge from hospital, I realised that there were very few buildings that I could access in my wheelchair. The National Building Regulations were far from adequate. It was a disgrace and I realised then that my town, city, province and country were terribly inaccessible. Yes, I was to do something about that. It actually became my career.

Legislation has changed and the building regulations have somewhat improved, including a special Part S10400 (Facilities for People with Disabilities) under the South African National Standards. But, for any of this to be a reality of access and integration, it needed to be understood, embraced, adopted, applied and policed. Sadly, though not nearly enough.

You see, it’s either all or nothing if you are a wheelchair user as each city or town becomes a minefield of its own without there being an App or map to forewarn you of where you can or cannot go. The inconveniences are not only embarrassing, time-consuming and inconsiderate, but darn right discriminating.

Whether you are trying to access a university or college, a government building resource, a place of employment or even just a holiday in a tourism environment, you can be stopped in your tracks by one or twenty stairs, a ramp that is far too steep, a building without an accessible toilet, a car park without designated parking or a pavement with no scoop.

It’s almost like landing on that block in monopoly that says: “Go to Jail”… The equivalent of: “Go home and stay home.”

The safety of wheelchair users in buildings is often an oversight with evacuation methods and planning ignoring the needs of wheelchair users and people with mobility impairments. The people who should be “going to jail” are the architects, developers, landlords, municipal authorities and policing authorities.

That hasn’t happened yet, which just shows the ineffectiveness of the ground-breaking Equality Act. To even lodge a complaint at the Equality Court would surprise you with its own inaccessibility. The building environment has not evolved, as it should have, in the last 30 years.

Ari Seirlis is the former CEO of the QuadPara Association of South Africa and, presently, a member of the Presidential Working Group on Disability. He is a wheelchair user and disability activist.

The only solution to all of this is to underwrite universal access into all infrastructure development authorities. That would make a huge impact in a short period of time and the ultimate beneficiary, in our lifespan, would be everyone.

Public transport is the most valuable asset a town or city can offer its residents and participants. An integrated and accessible public transport system, mobilises all citizens and brings a city alive. Free of traffic jams, free of gridlock, free of road rage, it will ensure the embrace of cities so that a city might become the “city of choice” for communities.

Our public transport system is broken bar a few initiatives. The metro rail system, if working at all, does not cater for wheelchair users. There is a mismatch between platform and rolling stock. The minibus-taxi industry recapitalisation programme, which sounded so creative and innovative, has failed to accommodate wheelchair users.

Long-haul buses are not accessible nor are most subsidised buses within cities. Bus Rapid Transit (BRT) – a concept copied by the government from South America – has failed to prove its worth for the mobility impaired sector. It is not seamless and the complimentary services do not allow for a door-to-door journey.

As ambitious as it is planned, the rollout has shortfalls, which disadvantages wheelchair users. Sadly, this is as a result of the mobility impaired community not being adequately consulted as a stakeholder in the 12 cities during planning or implementation.

The Gautrain is an example of an accessible transport service and routing. Although it still has some critical flaws in its operational elements, it does provide an efficient and seamless solution for a minuscule percentage of population travelling between OR Tambo International Airport, Johannesburg and Pretoria. Only a lucky few can enjoy its expensive convenience.

It is accessible public transport that gets people with mobility impairments to school, university or college, skills development training, employment, places of worship; provides them with the chance to spectate a sport and ultimately experience freedom. Anything less is a travesty.

After 30 years we are paralysed and immobile, not by our disabilities, but by an underdeveloped public transport infrastructure and service.

There is still a stigma attached to disability and this on its own presents discrimination on any given day. Sensitisation to disability has to start at school and higher education.

It can’t be imposed upon anyone nor enforced by legislation, it has got to be part of the conversation from the time you can start speaking a language.

Disability should be mainstreamed from school. If that is successful, you can put a sunset clause on the Employment Equity Act. To this day, there is still no disability sensitisation in school or higher education.

To be fair to government, since 1994, there has always been the intention, through the new Constitution, to create equality and opportunity for all. This has not been achieved. Intentions need to elevate to reality not only by piles of legislation, but the implementation and policing of such.

The disability sector was vigilant since 1994 and crafted the Integrated National Disability Strategy (INDS), then ensured that the United Nations Convention on the Rights of People with Disabilities (UNCRPD) was adopted by government and this was domesticated by the White Paper on the Rights of People with Disabilities (WPRPD).

A lot of progress on paper, a lot of applause and self-praise for this achievement over 30 years. The impact of this will only be felt through a stand-alone Disability Act and my wish is that the activists move hard and fast to ensure that it’s a legitimate celebration of the ultimate instrument for the achievement of a non-discriminatory and free environment.

South Africa is seen as gold standard in human rights; however, people with disabilities do not enjoy the same experience. Discrimination still exists for people with disabilities and Human Rights Day is a reminder of this.

Little did we know that, when we had our injury or were diagnosed with an illness that led to our disability, it would be the start not only of an inconvenience of sorts, but rather full-blown discrimination.

May the mannequins in that dressed-up window get some movement, opportunity and dignity in the new South Africa.

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