Olga Montufar Contreras is the president of the Step by Step Foundation, a multicultural organization that promotes the social mainstreaming of indigenous people with disabilities in Mexico. The daughter of a deaf woman, she was trained as an engineer and has a Master’s degree in development and social policy.
Perspective: From invisibility to inclusion for indigenous children with disabilities
By Olga Montufar Contreras
Indigenous people have long had to live with extreme poverty, discrimination and exclusion from society and social services. Within our communities, girls and boys with disabilities are the most vulnerable and fare the worst. Their marginalization persists even though three international human rights instruments – the Convention on the Rights of Persons with Disabilities, the United Nations Declaration on the Rights of Indigenous Peoples and the Convention on the Rights of the Child – afford us a historic opportunity to address the challenges faced by indigenous children with disabilities.
I grew up with physical disability, brought on by poliomyelitis, in an indigenous community and I have seen that despite the passing of the years, the situation has changed little – if at all. Today, just as when I was little, children with disabilities are ostracized and their rejection by the community extends to parents and siblings, because the disability is considered as divine punishment and a child with a disability is seen as a liability for the community. Now as then, it is extremely difficult to access services and meet the additional expenses generated by a family member with a disability. Grinding poverty, geographic isolation and political marginalization sustain and are reinforced by discrimination and prejudice. The consequences can be severe: Many mothers, weak and lacking the power to change things, remain silent about our condition or resort to infanticide.
My family is one of few that show solidarity towards their sons and daughters who have disabilities. In our case, this was partly because we had migrated to the city and could obtain housing closer to services. But in the desperate circumstances under which most of our families live, violations of our human rights are common and fail to spark concern among others. This is why it is necessary to mobilize the will and resources to take meaningful action.
One of the most pressing problems to be addressed is the lack of data on indigenous communities in general and on children with disabilities in particular. Data can be hard to gather: Indigenous households can be scattered, often in remote areas.
There might not be enough interviewers who speak indigenous languages. In many cases, families deny our existence to the people who conduct surveys. Even where parents acknowledge and want to support us, they can end up providing insufficient information because they have little of it to begin with, as there are few if any screening or diagnostic services. Because the lack of such services contributes to our invisibility, it is a threat to our physical and intellectual condition. Adding to the problems, girls and boys with disabilities often go unregistered at birth, and this is one of the main obstacles to the recognition of our citizenship and our right to public services. This should motivate research into disability among indigenous populations – and the results can serve as a starting point for developing public policies and services that address our needs and guarantee our rights.
The lack of access to the mainstream education system must also be corrected. The inclusion of indigenous children with disabilities is required under the Convention on the Rights of Persons with Disabilities, but in practice, inclusion is often beyond the reach of children from our communities: The distances they must travel daily to get to school can be prohibitive. Few schools have the minimum services and facilities to make learning accessible. And again, traditional community practices contribute to the lack of educational inclusion. Clan chiefs determine the roles of boys and girls from birth, and if a child has a disability, it is generally thought that sending her or him to school is a waste of time as well as an undue economic burden on the family. Many people think that those of us who have a disability are broken objects that will not be useful even if we are patched up. The situation is even worse for girls, as it is harder for us to obtain permission to study than it is for boys with disabilities.
Even when the community’s stigmas are overcome and we manage to attend school, our teachers face two obstacles: insufficient knowledge of indigenous languages and inadequate teacher training in inclusive education. This lack of training makes it more difficult to include children with disabilities. As a consequence, we are forced to rely on the goodwill of individual teachers to accept the challenge of including indigenous children with disabilities in their classrooms.
In Mexico as elsewhere, governments, international agencies and community groups are striving to eliminate the gap between what is ideal and what is currently possible. We must continue to work together to ensure more just and equitable childhoods, to transform the lives of indigenous girls and boys with disabilities with hope and opportunity – so they, too, can be free to let their dreams take flight.