Artscape CEO Marlene le Roux is making her voice heard, bringing a much-needed spotlight to the challenges facing post-polio sufferers worldwide.
March 26 is recognised worldwide by post-polio survivors as the day when the ground-breaking research of American virologist Dr Jonas Salk (1914-1995) announced his vaccine against the deadly disease in 1953.
Polio is a highly infectious disease that attacks the nervous system and can lead to spinal and respiratory paralysis, and in some cases death, mostly affecting young children.
Le Roux contracted polio in 1967, at barely three months old.
She said her story, like so many others – the majority of whom are found in Africa – “is a testament of the lack of care and empathy experienced by mothers and families who were disadvantaged by a racist political system”.
“Whereas millions of polio sufferers have been fortunate to receive the polio vaccine of Dr Salk and were healed since that day, many others, including myself, were denied access to this life-changing treatment in their childhood.
“In my case, the local doctor who was white did not administer polio drops to me that could have spared me the lifelong consequences that I am still battling with to this day, a daily reality for polio survivors: deformed limbs need braces, crutches, or wheelchairs. To add insult to injury, these assistive devices are very costly just to be mobile,” she said.
“We talk about the eradication of polio, but what do you do with post-polio sufferers? Post-polio sufferers have their lungs give in because I don't think people realise that your whole body is a muscle. Your muscles weaken, and women get hysterectomies. Women also get menopausal, and then you think that you have menopausal symptoms, but you have full-blown polio.
Le Roux explained that caliper (leg brace) costs between R30 000 and R40 000 which medical aids do not cover fully, and that there are other related costs included, such as physiotherapy, as constant muscle shortening makes it nearly impossible for many post-polio survivors to enjoy a full and healthy life like people who have not been affected by polio.
“I just came out of my 12th operation, and I had a hip replacement. We need to talk about these things and think about how we can make it easier for persons who are post-polio sufferers.
“Their families need to be educated, and also post-polio sufferers need to be educated about why their bodies are deteriorating. My body has deteriorated, and I know that. I feel my muscles are weakened and shortened. I now need to put things in place for me.
“But one of the issues is medical aids, as they don't register post-polio sufferers as chronic, and that means we don't get extensive physio or have a biokineticist… So we need to educate medical aids, we need to educate doctors, and we need to educate our local ordinary hospitals for them to assist more for post-polio sufferers,” Le Roux said.
She hopes that post-polio will be recognised as a chronic disease for medical aids to pay for necessary treatments, with extended benefits for physiotherapy, occupational therapy, and biokinetics.
What else she hopes to occur is that:
- Employers must realise that post-polio tires and weakens the body as it ages; they should, therefore, adjust the working hours for post-polio survivors.
- Governments all over the world must recognise that assistive devices are important for post-polio survivors, providing more assistance for them as they grow older.
- Local clinics in South Africa must be of better assistance to post-polio sufferers and render more effective service to assist with assistive devices that should be custom-made for them.
- Orthopaedic doctors and orthotists must be made more aware that a post-polio survivor is totally different from a person needing a prosthesis as an assistive device.
- More training must be given to orthotists to make calipers as this is a skill that is becoming scarce. I was once bluntly advised to rather have my leg amputated as it would be easier to replace it with a prosthesis.
“I think most importantly is that we must move to a Disability Rights Act, and that act will give persons with disabilities much more rights for us to look at being equitable and having equity.
“When we talk about equity, it automatically means access to resources that are needed. You can't talk about equality if you don't have resources. You can have a disability, and you can be functional, but you can't have equity if you don't have the resources.
“I'm in the theatre, for instance, and if I don't have transport to come to my job, how will I get there? I can't just hop in a normal taxi. I need to be able to have assistive devices, and I need to have a carer to assist me. I'm one of the lucky ones. Like any other person with a disability to say, we all want to say, ‘I am in a country that cares for me, ’” Le Roux said.
“What I want to say on the 26th of March, the day we remember when a vaccine has been developed, is give your child the polio drops.
“That's your child's right to get the polio drops, and then secondly, to all governments, please look after your post-polio sufferers.
“To our government, I want to say, we need to stop looking only at paying lip service. Let’s identify polio sufferers; let’s look at the local clinics. Local clinics already administer tests for high blood pressure, for insulin, for sugar diabetes, for all of those things, but what about our post-polio sufferers? Let's have a holistic approach to persons with disabilities.”