During his address at the 2025 Southern African Spinal Cord Association (SASCA) Congress last week, Ari Seirlis called on medical practitioners to better equip and prepare newly injured patients to manage the very scary unintended consequences of their spinal cord injury (SCI). Here is his full address:
It’s not easy to approach this stage to talk to people so committed to the rehabilitation of people with spinal cord injury and ask you to reconsider your programmes and approach on reintegration to include some of what I’m going to talk about: The unintended consequences of SCI.
I want to suggest a transition that I’m convinced is necessary.
Hopefully, we can strike a balance between what you do so well in rehabilitation, and what we as lobbyists and advocates for quadriplegics and paraplegics do to ensure that sooner rather than later, after discharge, people with spinal cord injuries are bullet-proof. Not only with the knowledge of the physical unintended consequences, but also those unintended and intended consequences that can break the mindset and morale of any human being.
There is health and there is wellness. Most of our rehabilitation facilities deliver the health element for newly spinal injured persons so well and I want to congratulate you for that. You know who you are.
We are missing the wellness secret and orientation to adjustment, surviving, coping and succeeding. The latter often not achieved.
I will explain.
The unintended consequences involving our health are bowel function, UTIs and bladder management, sexual dysfunction, temperature control, pressure sores, autonomic dysreflexia, spasms, pain, breathing difficulties, infections, PTSD, muscle atrophy, flaccidity, blood clots, osteoporosis/brittle bones and boning. And … Depression
These can all cause pre-mature mortality and significant morbidity. It’s scary, a lifelong threat. Realistically, we will face some and even all these in our journey.
With your guidance, we will manage these and get to understand the remedies. These unintended health issues need to be drummed into us. As you probably do.
Pushing and pivoting a wheelchair is relatively easy-peasy. The rest is very scary, intimidating and often … excuse my French … a shit show of obstacles, structural and systemic issues.
Let me explain.
This country is ruthless for wheelchair users and society is sometimes too. A noose is around our necks for survival. Not during our rehabilitation, but rather when you have waved goodbye.
The world has been built without wheelchairs in mind. Despite decades of disability rights advocacy, our cities, towns, townships, systems, and structures still largely ignore the daily realities of us wheelchair users.
We have no political representation. We brag globally about our unique Constitution and we’ve got incredible legislation in place, but this is all disingenuous including the Equality Act, the Employment Equity Act and National Building Regulations.
Buildings without ramps or elevators, narrow doorways, inaccessible restrooms, and poorly designed public transport are just the tip of the iceberg.
Accessible public transport is sparse if at all in most towns. Don’t be fooled by Cape Town’s bus rapid transport (BRT), Go George, Johannesburg’s Rea Vaya, and Tshwane’s A Re Yeng. It’s not such an easy journey on these BRT initiatives. And the Dial-a-Ride system is oversubscribed in Cape Town and Durban.
Even in places where accessibility is technically provided, it is often inadequate, unreliable, or treated as an afterthought. Try catching a bus where the ramp doesn’t work, that’s if there is a ramp, or worse, where the driver is untrained or unwilling.
Try navigating a government building where the elevator is broken, or the accessible parking is occupied by someone without a permit – a common occurrence.
When it comes to our health, for those fortunate to have medical aid cover, our perception is that we are ignored, a lost population, relatively few of us and not a priority for our funder to invest in. So, our health becomes an afterthought. We may be few, but we can cost you when our health fails, which is so easily avoidable.
For those with no medical cover and benefits at all, it is even worse and shameful. When a person has to queue all day at the dispensary (if they can even get there), just to find there is no stock of their supplies, to be told to come back another day.
These are not exceptions. For many wheelchair users, these are every-day obstacles that wear down resilience and limit participation in public life.
We are locked out by prejudice and infrastructure. We need to be empowered. While spinal cord injury may limit mobility, it doesn’t diminish a person’s intelligence, creativity, or capacity to work. Yet, wheelchair users face shocking employment discrimination and systemic exclusion.
Many workplaces are either physically inaccessible or culturally biased, with hiring managers who underestimate the capabilities of people with disabilities. Even when accommodations are legally mandated, there is a disturbing gap between policy and practice.
Remote work may have opened new doors for some, but many jobs still insist on rigid norms that favour able-bodied candidates. For individuals who are ready and willing to contribute, the lack of opportunity is not just frustrating, it’s dehumanising.
Spinal cord injuries often lead to social isolation, not because people don’t want to be involved, but because society fails to include them. A trip to the movies, a night at a friend’s home, or even going out to eat can become logistical nightmares.
Friends fall away. Invitations stop coming. Over time, the message becomes clear, you are not expected to belong.
The loss of independence is another harsh consequence. Many wheelchair users rely on personal assistants or caregivers, but accessing reliable care is expensive and inconsistent. Without support, basic daily activities become battles. The emotional toll of dependence, combined with societal exclusion, often leads to depression and reduced quality of life.
Until we break down these barriers, not just physical, but attitudinal, we will continue to fail thousands of people whose only real limitation is the world’s refusal to accommodate differences.
Rehabilitation can’t stop at the rehab centres. It is a life long journey. For us with spinal cord injury, the hospital is only the beginning. What follows is not just a journey of physical adaptation, but one of social survival.
And too often, the rehabilitation industry stops short, focusing on function and independence within controlled environments, while ignoring the systemic barriers that await us. We are taught to live with paralysis, but not to confront the paralysis of systems and infrastructure. We are discharged into a society that still treats access as optional and inclusion as a favour.
The result? A deeply avoidable cycle of isolation, unemployment, and as I said … a reduced quality of life. Reintegration is not a solo effort.
I encourage the rehabilitation industry to take a broader view. Reintegration is not just personal, it’s political. Empower us with advocacy skills, and advocate with us, loudly and publicly, for the changes that true independence requires.
In employment and access, there are gaps we pretend aren’t there. Are you preparing us for discrimination, access limitations, or the psychological toll of repeated rejections?
The rehab industry must evolve. True rehabilitation must extend beyond physical recovery, it must include societal transformation. That means:
- Advocating for universal design in public and private spaces.
- Partnering with government and NGOs like QASA to close accessibility gaps.
- Working with employers to create inclusive hiring pipelines.
- Preparing clients for real-life barriers and systemic bias.
- Hiring more professionals with lived disability experience and peer supporters.
You are not just treating people. You are rebuilding lives. The message is simple, spinal cord injury may change the body, but its society’s response that determines the outcome. If we don’t address the unintended consequences, social exclusion, unemployment, access denial, then we are only doing half the job.
Our equipment is ridiculously expensive and I can’t help feeling for people on a disability grant relying on state health care with clinics in disarray and many health professionals working in these oversubscribed facilities not understanding us all.
How they survive I just don’t know. My heart goes out to them and I doubt that many survive the 41 years that I have had with a spinal cord injury.
I am privileged and I am lucky, but also very grateful. I am a private school boy, had parents with financial resources and financially secure. I’ve been a serial entrepreneur and served QASA for 20 years as the CEO. I guess it’s been a breeze for me, but not for most. And it’s those who I represent in this address.
If we are beneficiaries of the Road Accident Fund, the undertaking system fails us. If we depend on COID, the re-imbursement guarantee is not honoured. This fight seems lost. It cannot be.
It is an absolute nightmare for somebody with no financial resources in order to survive with some sort of hope and opportunity in the mainstream South Africa.
It is difficult. Very difficult.
Having said all of that … and very little that I have said is positive … what do we do about it?
Let me be the first to say that QASA needs to up our game. We spend 80 percent of our budget on wheelchairs, skills development, publications, driver training, caregiver training, assistive devices, and some support for members who want to participate in sport, arts and culture.
Actually, all of this that we invest in, should be the responsibility of the various government departments. We should be spending 80 percent of our budget on advocacy and lobby for the rights of our members.
It will be a long hard slog. An unpopular exercise and we need to regain our civil courage and moral compass and marry these two.
Furthermore, what can we do? QASA and SASCA must collaborate and I believe design bullet-proof modules and invite, or even impose these upon newly injured persons with spinal cord injuries to participate in a webinar format. This will be affective orientation to life after rehabilitation.
Medical aids, who brag about their vitality programmes, all of which exclude opportunities for people with mobility impairments, should then be funding these, and issue the necessary loyalty points for the participants. We would be willing participants.
I am very honoured to be on the stage. I know it is a privilege. And I call on all of us, to hear us, as my voice is not singular, but it represents all of us with spinal cord injuries, post rehabilitation.
Please acknowledge that our suffering and our crippling is not as a result of spinal cord injury, but rather the unequal environment that we are discharged into. Legislation not designed by us, but for us, and society who still see us as disabled and want us to be fixed. We are disabled by infrastructure and society, not by spinal cord injury.
I haven’t pointed fingers but rather put the scenario as it is and ask that we re-look at what we do to bullet-proof us for what life throws at us in unintended consequences and intended consequences in southern Africa. We are resilient, but to an extent.
I end off with three quotes which resonate with my message:
“I think a hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles. Once you choose hope, anything’s possible. So many of our dreams at first seem impossible, then they seem improbable, and then, when we summon the will, they soon become inevitable.” – Christopher Reeve (Superman)
“The greatest glory in living lies not in never falling, but in rising every time we fall.” – Nelson Mandela
“Coming together is a beginning. Keeping together is progress. Working together is success.” – Stephen Covey
