A classmate in an economics class once said that special education was a poor public policy choice because the return on investment would not be high. Unfortunately, this is the type of misguided utilitarian thinking that has largely left disability off the international health and development agenda.
In societies with innumerable needs, persons with disabilities are not considered a priority. Can we really ask countries to have services for people with disabilities when even the “regular” people have trouble accessing basic healthcare and even “normal” children are often out of school?
The question should not be: can we afford to address the needs of persons with disabilities? The real question is: can we afford not to? More than 15% of the world’s population, over one billion people, have some kind of disability. While disability is not mentioned at all in the Millennium Development Goals, from the evidence it is clear that the inclusion of persons with disabilities is going to be absolutely essential for their realisation.
Let’s first look at this problem at the micro level. When a child with a disability is born it is sometimes viewed as a great shame or curse on the family. Due to this stigma associated with disability, often times the father and/or extended family will abandon them. The mother often finds it difficult to work because, without a support network, no one can care for the child. This plunges the family into poverty.
Without assistive equipment and therapy services, the child is at greater risk of health complications. Children who need assistance with toileting in areas with poor sanitation are at greater risk of diarrhea and urinary tract infections. Lying in one position tied to a bed all day causes terrible bedsores, which can also become dangerously infected. Children who have difficulty with swallowing are at greater risk of aspirating and getting pneumonia, the leading cause of death of children worldwide.
The additional expense of treating these problems is often unaffordable for the family that is already in economic straits because of social exclusion. Even if they do try to go to a doctor, persons with disabilities are three times more likely to report being denied care. The cost of leaving them untreated can be deadly, and it is the reason that UNICEF estimates the mortality rate for children with disabilities is as high as 80% in some countries. Yet for all this vulnerability, disability is not often a major topic in conversations about reaching MDG 4: reduce child mortality.
Thinking about persons with disabilities as a lost cause is a self-fulfilling prophecy. Keeping children with disabilities hidden and locked away at home or in institutions sentences them to a lifetime of being kept that way. Studies show that 98% of children with disabilities worldwide are out of school. Without any therapy or services and exposure to the outside world, they will never be able to fully enter and integrate into it. Yet despite this staggering statistic there is little conversation about what MDG 2: Achieve Universal Primary Education means for children with disabilities who may need special education.
Families that are stigmatized and without support are caught in a poverty trap of a different kind too often overlooked by major development organizations. It is a vicious cycle that costs both families and the societies they live in an incredible amount in healthcare spending and lost productivity, both from the individual with a disability who has been denied a chance to work and their family who must take care of them instead of engaging in other productive pursuits.
These injustices and denials of basic human rights compound to have major effects on a macro level. Indeed, a study done by the International Labor Organization found that the cost to society in low- and middle-income countries of excluding people with disabilities is “large and measurable, ranging from 3 to 7 percent of GDP”.
That cost is not something that developing countries can afford. So, what if instead we imagine the life of a child with disability as one full of possibilities? Community-based services for persons with disabilities can make a world of difference for both them and their families. Promising models for promoting inclusive societies in the developing world are beginning to emerge.
Take, for example Ima* and Neemah*, two individuals with intellectual disabilities in Tanzania currently being served by a small local program called Building a Caring Community. Since attending a small community care center in their local parishes, they received basic education and occupational therapy services.
While at this safe and nurturing place, their mother had the opportunity to work – one taking a micro-credit loan to start a small shop and the other working in a social-business sewing co-op. After reaching adolescence, they attended a local vocational training center alongside non-disabled peers. Now they are employed, Neemah cleaning and helping her mother raise chickens, and Ima in the program’s social-business construction co-op alongside fathers of children with disabilities. They are participating and included members of their community.
Even children with the most severe disabilities and their families can be helped by such services. Take for example, Eli*, a child with severe cerebral palsy and intellectual disability. In addition to receiving a custom wheelchair and attending the center, his mother, Jan, underwent training in disability care and basic therapy techniques and is now employed by the center. She is now able to both provide for her son and also serve as a leader in her community, teaching mothers and creating a virtuous cycle of acceptance and improved health.
For those for whom the moral argument is not enough, this economic argument shows when we invest in society’s most vulnerable, the ripple effects are huge. Mothers that would have had to drop out of the labour market to care for their children are now starting businesses. Children who would have been written off as useless burdens on their families are contributing and participating members of the community. Even those whose impairments are severe are treated with human dignity.
Persons with disabilities must no longer be ignored in the post-2015 development agenda. We need more research on what community-based disability services models are most effective and how to bring them to scale. We need mainstream development programs to be inclusive of persons with disabilities in their operations. The possibilities to make great strides in the tangible realisation of the rights of persons with disabilities are huge – if only the international community is willing to make the strategic investment in their equality.
*Names of all children have been changed for privacy purposes.