Sana Hafeez, WHO Champion for assistive technology, told her story at the World Health Assembly
22 May 2018 - I would like to share the story of a young outstanding and brilliant girl, who always scored more than 90% in her school, a topper of the secondary board exam, a distinction holder in Medical school, who walked into the medical school with a big dream of becoming a plastic surgeon. But on the graduation day, she had to propel her wheelchair to the stage, wearing orthoses to support her legs to receive her degree… and that young graduate was none other than me … Dr. Sana Hafeez
Let me first thank WHO for enabling me to be part of this conference. I am honoured and it is my real proud privilege to say a few words from the perspective of a person who encountered this lifelong disability, just 2 years ago.
Accepting the challenge
On the eve of 18 March, 2016, at the wedding ceremony of my best friend, I had a tragic accident and lost consciousness within a fraction of a second. After regaining consciousness, I tried to move my legs but couldn’t. I consider myself fortunate because my friend’s mother, who herself was a doctor, was present at the same wedding and, because of her knowledge, didn’t let other people push me into a car and rush me to a hospital. Instead, I was laid on a couch till the ambulance arrived. But we were saddened to know that it did not have any spinal board in it. So we had to wait for another half hour till the arrival of a second ambulance with better facilities in it. And then with a delay of two hours I was taken to a nearby hospital. When I was transferred out of the ambulance, it was raining, I could feel the raindrops pouring on my body, but not on my legs and feet. At that very moment, being a medical student, I realized the gravity of what had struck me.
Lying on the hospital bed with two fractured vertebrae, I screamed, I cried, complained, and eventually broke down completely. This was something that I did not ask for. I had two options: either curl up in bed all day and cry, or accept the challenge of a new life and begin the journey of healing. I accepted the challenge of redefining my new life, not to give up.
I use many assistive products to remain independent
Before my accident, being a medical student, I had the theoretical knowledge about spinal cord injury and its complications. But it was not until my accident that I came to understand the consequences for an individual, family and the community. To say you’re paralyzed for the rest of the life is grief enough. But the limitations we have to face on different levels, is unbelievable, even today.
As I was comparatively privileged, I had the opportunity to access good rehabilitation services and a wheelchair. I tried with orthoses on both legs to improve my standing balance and to prevent secondary complications, but for practical reasons, ultimately, I settled on a wheelchair as it gives me better mobility and freedom. I use many assistive products to remain independent and productive, such as a transfer board for shifting from car to wheelchair or vice-versa, I use an air mattress at home that saves me from bed sores. Without all these aids, I might live in isolation, with many secondary complications.
Eventually I started enquiring about others – what happens to those living with similar challenges? I soon realized that I am not alone – millions of people like me exist around the globe. Disability is not only a result of accidents, some people are born with it, some experience it at an early age, while others experience in their old age. In low and middle income countries, these people generally have poorer health, lower educational achievements, fewer economic opportunities and higher rates of poverty. This is largely due to the barriers they face in their everyday lives, rather than their impairment or health conditions.
Only 10% of people in the world have access to assistive products
I am mentioning this to highlight the fact that only 10% of people in the world have access to such kind of basic health products – assistive products – and this percentage could be as low as 3% in many developing countries.
Personally, I think the first and biggest barrier to access is awareness about the need for and benefit of assistive products. Even health professionals do not know it or care about it. After being discharged from the hospital, I was told that I should contact social welfare and not the health sector anymore – I am disabled so, I should become a product of social welfare. I have discovered that this experience is quite universal. I remember a girl of my age who used to come to the same rehab centre with a similar disability but with a wheelchair twice her size, because of lack of awareness and low access to affordable wheelchairs.
We need to create awareness at every level, especially in the heath sector.
The second barrier is the preparedness of the health sector. Most people with spinal cord injury die within 1 to 5 years in developing countries, because not much attention is given to providing proper information regarding spinal cord injury, its complications and management. In most low and middle income countries, with higher rates of poverty and poorer health, people die not because of the spinal cord injury, but because of the secondary complications.
The most common complication is urinary tract infections with a high mortality rate in women, another avoidable complication is bed sores. Correcting bed sores itself is a nightmare and carries a greater burden for individuals and their families. Another is deep vein thrombosis, and the list goes on. If secondary complications are prevailing, that means the health sector is failing. The health sector needs to look beyond primary care. We have the right to live a healthy life like all of you.
Universal health coverage or Health for all – do we really mean it?
Are we really part of it? Is the provision of assistive products an integral part of Universal Health Coverage? I hope it is. If not, we need to do something – you never know what tomorrow will bring, just like I did not know that I would need to use a wheelchair for the rest of my life.
I now know that as people gets older, they will need more and more assistive products – starting with glasses and ending with wheelchairs – again, I am not alone.
The third barrier is the lack of access to appropriate assistive products, especially within the health sector. I got lucky because my uncle sent a good quality wheelchair from abroad, but how many can get lucky and have access to the same? But despite having good rehab services, I use substandard lower limb orthoses due to lack of access to high quality assistive products in my country.
After amputating a leg or stabilizing the spine, the job is not complete. I am well aware that we can prevent amputations in most diabetic cases with good health care, including self-care and a simple assistive product such as protective footwear. Hearing aids and dementia, mobility aids and good cushions or mattresses for pressure sores. We have the knowledge and these products exist – so we want to ensure they are available within the health sector for everyone.
There are essential health products as essential as medicines or vaccines for people in need. I am happy to see WHO is addressing this and I am sure countries will follow.
The physical environment is not designed for people with disabilities
The fourth barrier that is faced by people with disability is accessibility. Soon after having an appropriate wheelchair I decided to go out and be like others, practise medicine like other classmates. But I realized “Oh No” the physical environment, in which we all live, is not designed for all; especially for people like us and older people. Not every place in most countries has accessible entrances and exits. Most of the public places like universities, banks, parks, offices, stadiums, cinema halls, shopping malls, parking areas, are not accessible - this makes us feel excluded.
It is not about cost, I have been informed that nearly at the same cost, one can build an accessible environment. Please keep it in mind as demography is changing, we will all need an accessible environment at some stage. It is no more a luxury or add-on item – it is must. Anything good for us will be good for all.
A lot has to do with thinking, design and empathy. A person’s disability depends on people’s attitude, availability of assistive products and accessible environment.
Member States need to address these barriers to access to assistive technology.
I am honoured to be designated WHO Champion for Assistive Technology. I decided to dedicate my life to creating awareness, making the health sector more inclusive and prepared, improving access to high-quality, affordable assistive products and accessible environments.
This is my new dream – I need your support to achieve it. I hope that with the adoption of the Global Resolution on assistive technology the goal of one billion people accessing affordable, high quality assistive products will become a reality.