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The Social Costs of Blindness
Editor's Note: Mary Anne Burke is the former Director of Research at the Roeher Institute in Toronto. In April of 2004, she began working for the Global Forum for Health Research in Geneva, Switzerland.
Photo: Head shot of Mary Anne Burke.
"Seven out of ten Canadians would rather lose the use of their legs or hearing than their sight."
This rather startling statistic from the latest Environics poll doesn't surprise me. Going blind was always my biggest fear. Fifteen years ago, I would have been among those seven.
Fifteen years ago, my ten-year-old daughter, Hannah, was diagnosed with Retinitis Pigmentosa--and I would have given anything to be blind instead of her.
With Hannah, I began to explore the world of blindness. These past 15 years have been a real journey for me--a journey from fear to hope to joy.
I want to address three things: the construction of fear; the costs of exclusion; and the costs of the quest for perfection.
The Construction of Fear
Language is a powerful tool for generating fear. Here are just a few quotes I pulled off the internet:
"Blindness occurring in infancy and childhood is a long-lasting drain, both in terms of social dependence and lost productivity."--International Council of Ophthalmology
"The loss of eyesight is one of the most serious misfortunes that can befall a person" and "... blindness is not only a public health and social problem. Apart from the unspeakable suffering and hardship ... it ... is a serious drain on the national economy."-W.H.O. Fact Sheet number 142
Imagine being a parent of a child newly diagnosed with blindness and seeing these words. Imagine what thoughts a blind person would have on hearing those words.
A 2002 Roeher Institute review of medical textbooks found that "medical students are trained from the outset to view disability as 'abnormal', a 'defect' ... Disability is equated with abnormality, individual pathology, personal suffering, and familial and societal burden."
Fear is engendered not just around a diagnosis of blindness, but even the possibility of blindness. For example, one much-used textbook by Marteau and Richards describes individuals "condemned to a life sentence in the knowledge that they, or their children, will suffer from an incurable genetic disease."
From a sociological perspective, language both creates and is created by a hierarchy, wherein members of society who hold greater amounts of power ascribe status to those below them and influence their degree of participation in society. As the disability scholar, Linton, states in "Claiming Disability: Knowledge and Identity":
"... Language that conveys passivity and victimization reinforces certain stereotypes ... Much of the language used to depict disabled persons relates the lack of control to the perceived incapacities, and implies that sadness and misery are the product of the disabling condition."
This negative viewpoint results in wide-scale intolerance of disability and other deviance from what is perceived to be the "norm". Intolerance grows out of the fear of what we do not know. It also has led to the separation and segregation of those perceived to be different.
The Human Resource Development Canada document, "A Way with Words: Guidelines and Appropriate Terminology for the Portrayal of Persons with Disabilities", reinforces this notion. It states that:
"... Language is a powerful and important tool in shaping ideas, perceptions and, ultimately, public attitudes. Words are a mirror of society's attitudes and perceptions. Attitudes can be the most difficult barrier ... in gaining full integration, acceptance and participation in society ... Demeaning, belittling or negative words are a barrier to greater understanding."
Until I ventured into the world of blindness with Hannah, I knew not one single blind person. All I knew were negative stereotypes and images.
Most people of my age would have had a very similar experience. Blind children didn't play with us, they didn't ride bikes with us--they didn't exist for us. They lived a very segregated life, going to the school for the blind, or not at all.
Despite stated intentions to move from a segregated to a more inclusive approach in Canada, segregation and social exclusion persist. Exclusion begins in infancy and continues into school and adulthood, despite Charter Equality Rights. Across the country, public policies fail to support inclusive environments.
Recent Roeher Institute research to rate child care and education policies across the country according to a number of elements of inclusion found that policy environments largely do not support inclusion, and that actual practices in child care centres and schools fall far short of stated policy intentions.
Child care policy environments are poor to barely adequate at supporting inclusion across most of the country; the same is true of education policies.
Segregation is a powerful tool for generating fear. Negative stereotypes and mistaken notions about the world of blindness fester and flourish in a climate of ignorance. These stereotypes and the lack of recognition or awareness of the richness of the lives people living with vision impairment or blindness may enjoy when they are well supported also help to paint a bleak picture of the world of blindness.
As I began to meet and talk with blind people, my fears subsided and I realized that the picture was not so bleak after all. I became friends with people who lived full, rich lives with jobs, spouses and children-each with their own talents and gifts to give.
After high school Hannah headed off to university, including a year in Spain. One month before the end of her Fourth Year, she lost all her vision. With the help of a couple of Graduate students and a Canadian National Institute for the Blind (CNIB) volunteer, she was able to research and write her final papers, study for exams and complete her Honours Thesis.
Last year she participated in a Youth Internship with a human rights NGO in Costa Rica. With her new laptop in hand, she quickly impressed the local staff, organizing workshops, presenting papers and running programs for street youth. During her Christmas vacation, she got herself to Mexico to fulfill her dream of going where all the Monarch Butterflies migrate in winter. She sat in the Butterfly Sanctuary covered with thousands of butterflies, feeling the air pulsing around her. The experience surpassed all her expectations!
Hannah is fiercely independent, has the whole world ahead of her, and plans to take it by storm.
Hannah's success, in part due to her own personal resources and determined spirit, was also ensured by a system of supports and services that kicked into place after her diagnosis. My husband and I were determined that she be fully prepared to pursue her dreams and lead a fulfilling, independent life.
Her school supported us all in achieving our goals. The CNIB helped to link us to other families dealing with vision loss. Those connections in the early days after diagnosis were a vital lifeline for us all. The CNIB also helped Hannah to meet other blind and vision-impaired children, and as she headed off to university, prepared her to live safely in her own apartment.
While there were a few bumps along the way, we were fortunate to receive the supports and services we needed. However, the experience of many others is not so positive.
The Costs of Exclusion
The Roeher Institute has documented many heartbreaking stories of parents whose efforts to secure needed supports and services were not successful, leading them to the point of desperation.
The research concludes that the devaluation of people with disabilities has resulted in failure to put into place the supports and services that would enable people with disabilities to lead full lives as active members of their families and communities.
Supports and services critical for Hannah's success are either inadequate or not available for thousands of people across the country.
Families are the first line of support, but typically are not well supported. The poorly functioning system not only fails to meet the needs of families and persons with disabilities, but also creates a huge drain on their energy, time and emotions. These needless costs need to be quantified.
Shortages of ophthalmologists result in delays in receiving diagnoses, and hence in supports and service, and in long waits in waiting rooms as doctors juggle scheduled patients with emergencies. We typically waited seven hours at every appointment. With a two-week-old baby in arm and two other children at home, this took a huge toll on our family as we tried to juggle child care, babysitters, meal preparation, jobs, supporting Hannah's emotional needs and trying to come to terms with the diagnosis we had just received. It was overwhelming.
The costs incurred because of environments and social structures that do not reflect nor meet the needs of people with disabilities and their families are devastating to families, to persons with disabilities and to society at large.
Non-supportive work environments and inadequacies in supports and services result in nearly three-quarters of families with children with severe disabilities having their employment situation negatively affected. Many of these same families have much lower incomes than families with no children with disabilities.
More than two-thirds of families with children with severe disabilities report that they do not receive all the support they need. The same is true for two-thirds of the children.
For students, the gap between supports and services they need and what they actually receive is high, especially with regard to: physical access; transportation and other services; support workers; computers, talking books, magnifiers, tape recorders etc. Segregated, special education, furthermore, leads to lower educational attainment and poorer economic outcomes later in life.
Lack of disability-specific services and transportation are major issues and are a key barrier for entry into and successful integration in the labour market. Given the multitude of barriers, persons with disabilities also have weaker attachment to the labour force, resulting in lower incomes. Exclusion from the labour market results in deep poverty as housing costs alone eat up 72% and more of monies received from inadequate disability pensions.
Inaccessibility of generic community services is also a major barrier, as is cost.
It is imperative that cost analyses include these costs of exclusion.
The Cost of the Quest for Perfection
It is equally important to understand the huge costs that may result from some of the assumptions underpinning the costing exercise itself.
One of the underlying assumptions is that it is desirable to strive to "perfect" human beings.
On the one hand, it could be argued that the search for perfection diverts research dollars into genetic and other emerging technologies and away from research on the social and economic factors that would remove barriers to full social participation and would enable inclusion and a welcoming environment for all persons. On the other hand, it has been argued that it contributes to the devaluation of persons considered to be "deficient", "impaired" or otherwise different from the "norm". This happens at several levels.
We often send negative messages without even realizing it. For me, the turning point came when, at age 16, Hannah said, "Mom, my life would be a whole lot better if you would just accept me for who I am. I'm happy with who I am. I would not be the same person without my disability."
It sure set me back on my heels a bit. I was always looking for the miracle cure--the experimental surgery that would restore her retinas.
Imagine what it does to someone's self-esteem when, from birth, they hear over and over again that they are broken and need fixing. When we send out messages equating blindness and vision impairment with social and economic drain and burden, what message are we sending to people who live with blindness and vision impairment about the value of their lives? What are the costs of these messages?
Persons with disabilities cite low self-esteem as a key barrier to employment. Low self-esteem and self-confidence are also reported as barriers to enrollment in further education, training and upgrading.
Another related assumption--that disabilities limit opportunities and welfare and impose social and economic burdens--is also quite costly.
Many have taken the logic a step further, arguing that the lives of persons with disabilities are not worth living, even if they do not literally suffer as a result of their disabilities. Others contend that it is morally wrong for a pregnant woman to carry to term and give birth to a baby who might be disabled. In Canada and many other countries in the world, prenatal screening, testing and genetic counselling have been put into place to weed out those deemed "unfit" for life.
This stems from yet another assumption underpinning the costing campaign--that people who are not "productive" do not contribute to society, but rather impose a heavy burden. This is the assumption that perhaps has the potential to incur the highest cost.
In making this assumption, we fail to acknowledge that people make contributions by their "beings", not just their "doings". Their presence alone can be a tremendous catalyst for transformation, human growth and development--for the development of love, compassion and caring and other core human values.
Since Hannah's diagnosis, our family has had to deal with many challenges that we would not have faced had Hannah not been blind. Our lives are richer for it. I've formed lasting friendships with people who are real gifts in my life--people I would never have otherwise met. Hannah has challenged me to grow, to see diversity as a gift and to live life through a different lens.
After Hannah's graduation ceremonies, the two young Master's students climbed through the crowds so that they could have their pictures taken with Hannah. Their moms confided to me that their sons had learned far more from Hannah than Hannah had learned from them. They could never thank Hannah enough for being present in their lives and that they had profoundly and radically grown as a result of their relationship with her.
These are not isolated experiences. This is a message heard over and over in research across the country, from family members, friends and persons with disabilities alike.
A focus on economic/productive contribution is devaluing--it reduces people's value to a commodity, in that persons are accorded value for what they can "do", not for who they "are" and what they can "be". It diminishes us all as humans. Any cost/benefit analysis of the social and economic impacts of blindness on Canadian society must address these very complex issues.
The costs of failing to adequately support blind and vision-impaired persons and their families to live meaningful lives are enormous. Many are beyond quantification.
What cost do we assign for loss of basic human dignity? For the commodification and devaluing of persons? For the loss of our own humanity?