The wheelchair is the international symbol for disability – it’s a curious choice of symbol, considering that while 15% of the population are people with disabilities, less than 0.1% of the population has a spinal cord injury.
In a report from the World Health Organisation (WHO), attitudes to SCI and the services available have been studied using data from around the world. While spinal cord injury certainly poses challenges to the individual, it can also challenge and stretch healthcare systems in developing nations. In fact, even developed nations can struggle to fund services and assistive technologies, leaving the private sector to pick up the slack – for better or worse.
But there’s more to spinal cord injury than how it’s treated or how it impacts everyday activities – there’s a spectrum of attitudes towards SCI, ranging from open to presumptive, and from helpful to harmful.
The WHO report is an extremely deep look into SCI around the world – one that confirms what many of us already knew. In this article, we’ve recapped some of the standout findings and stories to make them easier to digest; although some of the facts presented are still a little hard to swallow.
Understanding the Impact of Spinal Cord Injury
The WHO report paints SCI in modern times as being less of a medical challenge and more of a personal and social challenge.
The report found that, while SCI is life-disrupting, modern medicine has made life for people with SCI better. Mortality rates are lower than ever before. Rehabilitation and improved accessibility have given better opportunities. Barriers are either internal or imposed by society through lingering negative attitudes.
But the above points only apply to high income nations, where there is better funding. In less economically developed countries, the situation is bleaker – from all aspects. In Sierra Leone, most people with SCI die within a few years of injury.
It may seem obvious that poverty makes living with SCI much more difficult, but it doesn’t seem to resonate with many as strongly as it should. In most developing nations, the care, accessibility and technology for assisting SCI patients today is as it was in Europe and the USA in the 1940s.
Society has differing attitudes from nation to nation, but it’s clear that with the right environment, support and community inclusion, people with SCI can flourish.
A Global Snapshot of Spinal Cord Injury
Only a handful of wealthy nations are able to provide statistics and qualitative data on spinal cord injury.
Iran, Finland, Norway, Iceland, Canada and Australia have all kept sound records of SCI prevalence relatively recently. Canada’s sample is the largest and most detailed, and at first this points to a higher rate of incidents: the report is quick to point out that the data may be skewed by sheer numbers, although North America as a whole does seem to have a different trend to other nations.
Mortality Rates in Spinal Cord Injury Patients
In developed nations, life expectancy has steadily and greatly improved since the 1950s. In poorer parts of the world, people continue to die from preventable secondary conditions – with urological infections labeled the most common killer. In the well-equipped hospitals of the USA, the average mortality rate of people with SCI is as low as 6.1% – in Nigeria, it’s as high as 35%.
The report shows that poverty and wealth are the leading indicators for quality of life and survival of SCI.
Enabling Environments
Poor accessibility is a global problem. In southern Africa, survey data used in the WHO report found that generally speaking, disabled people live in inferior housing to non-disabled people.
It’s not a problem localised to less economically developed nations; in the UK research shows there is insufficient funding for adapting living spaces and a lack of accessible housing. An estimated 78,000 UK wheelchair users have unmet housing needs.
Education and Employment
Anecdotal evidence puts stigma and assumption at the top of social barriers to people with spinal cord injuries. This is especially true in educational and workplace environments, where assumptions are often made about ability.
In Cambodia, as many as 45% of disabled children are absent from school.
One survey respondent from South Africa explains difficulties in further education – a lack of understanding from fellow students, staff and administrators has led to an “us vs them” attitude towards students with disabilities.
Other anecdotes place work as a confidence driver – but opportunities are not equal and vary by location and employer. Environmental factors outweigh demographic factors. Vocational rehabilitation and disability allowances aren’t widespread phenomena and in low income countries where no such programs exist, self-employment in arts and crafts and selling homemade products becomes a revenue stream for many.
Still, in many countries, poverty is an overwhelming issue. In southern India, the majority of people with SCI live below the poverty line – in Nepal, the majority have no income at all within a few years of being discharged.
In some countries, like the Netherlands, unemployment insurance is compulsory – which leads to 97% of people funded post injury if they are unable to return to work.
The WHO report suggests changes in policy and law to protect children and young people with SCI from losing out on education. It also suggests that self-employment should be encouraged, with micro financing options, and that there should be more accessible vocational rehabilitation schemes in place.
Associated Healthcare Needs
Often overlooked are the secondary conditions associated with SCI:
- Autonomic dysreflexia
- Chronic pain
- Deep vein thrombosis
- Urinary tract infections
- Osteoporosis
- Reduced lung function
- Spasms
- Pneumonia
- Pressure Ulcers
Commonly experienced bowel conditions, including chronic constipation, reduced bowel motility and incontinence – can impact social participation.
Sexual health, fertility and function are also commonly overlooked. The report found that sexual and reproductive health are taboo to some healthcare professionals – either because the conversation makes them uncomfortable or because they have a knowledge gap in that area.
According to the report’s suggestions, management of sexual function and fertility must be carried out in an open manner with both partners. It should consider age, culture and physical and social factors, as well as contraception and general sexual health.
Assistance with arousal and stimulation, monitoring the effect of pregnancy on a spinal cord injury and managing medication during pregnancy are key areas to consider.
Assistive Technology
In countries where government resources are limited, the WHO report suggests that NGOs and the private sector should be filling the gap. This is the case in Zambia, where the largest provider of assistive technology is the private sector.
Attitudes and Relationships
“Staring, ignoring, evading, stereotyping and marginalizing are actions manifesting negative attitudes.”
Disability is, in some cultures, associated with witchcraft, sin and karma. The WHO report found that, even in modern times, stereotypes of disability include dependency, passivity and incompatibility with a high quality of life.
A study of 40 families of children with spina bifida in Kenya found that seven families were shunned by their community. Nine families felt that having a disabled child was a curse. A Bangladeshi study found some families held negative attitudes and low expectations of their disabled relatives.
To remedy this, the report suggests better integration, targeted intervention and workshops with communities, workplaces and schools.
“The more that people with SCI go to mainstream schools, travel on public transport, live in ordinary neighbourhoods and work in mainstream workplaces, the more that children and adults without disabilities will learn to understand and respect them as part of the diversity of society.”
Integration is beneficial for all, and positive experiences help reinforce better attitudes while reducing the prevalence of negative stereotypes. Disabled role models and advocates can improve understanding and acceptance.
Changing Attitudes in Haiti
The Haitian earthquake of 2010 was devastating and left many people with spinal cord injuries. The Haitian culture is largely dismissive of disabled people – often seeing them as worthless. For aid workers, NGOs and community participants, championing inclusivity in Haiti posed a significant challenge.
Using the universal popularity of sport, a campaign based on disabled athletics was used in the buildup to the 2012 Paralympics. This helped elevate the stature of disabled persons in Haiti, with local sportspeople garnering significant attention. While the country still struggles with accessibility and funding, a shift in attitude is profoundly helpful in establishing stronger communities – paving the way for better lives.
Spinal Cord Injury: Future Prospects
SCI is more survivable than ever and while there is work to do in some parts of the world, the trend of prevalence increasing globally is due to reduced mortality and longer life expectancy for people with a spinal cord injury. The report makes six key recommendations that, when used together, could improve life for millions of people.
With between 250,000 and 500,000 people suffering spinal cord injuries every year in a growing population, there’s a greater need than ever for improvements in healthcare, inclusion and attitudes.
- Improve health sector response to spinal cord injury
- Empower people with spinal cord injury and their families
- Challenge negative attitudes to people with spinal cord injury
- Ensure that buildings, transport and information are accessible
- Support employment and self-employment
- Promote appropriate research and data collection
To read the full 247-page report, visit the WHO website, where the report can be downloaded as a PDF or PowerPoint presentation, and you’ll also find several resources on SCI.
Talk to a Spinal Cord Injury Specialist
Aspire Law is a specialist law firm, working for people with SCI. For information and spinal cord injury legal advice, get in touch: give us a call on 0800 030 20 40.
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