Sirad Shridon
Tuesday, July 30, 2013
It’s clear that there is a stigma attached to disability in the Somali community. Some parents keep their children with developmental disabilities at home, fearing that if they’re in the public eye, they will be the talk of the community and the family will be looked down upon. This is not a new outlook, adopted while in the diaspora, as even in pre-civil war Somalia, Somalis with developmental disabilities were often hidden from their communities. Moreover, other Somalis believe that disabilities are from Allah and nothing can be done to change the conditions of these children. This outlook stops parents short from reaching out for help from schools, doctors, or therapists, as they don’t believe the situation will be bettered. While Islam does indeed teach us that everything is from Allah, we also learn that if someone is ill, we should do everything possible to assist them. It is time that we had an open and honest discussion about disability, about the resources available to disabled children and their families, and how we can ensure that all Somali parents feel secure within their communities, regardless of the medical condition of their children.
To begin, I wanted to define some terms to assist you in understanding the issues this article seeks to raise. Developmental disabilities are disabilities that leave affected individuals with impairments in the following areas: physical, learning, language or behavior. These disabilities typically show up before the age of 18 and impact individuals for the whole span of their lives. Conditions which fall under this category include Autism, Attention Deficit/ Hyperactivity Disorder (ADHD), Learning Disability, Cerebral Palsy and Down’s syndrome. Developmental delays also indicate the above, but only last temporarily. For example, a child who is not speaking by the age of 4 would be classified as developmentally delayed, but that label would disappear once they begin talking. Astonishingly, the Centers for Disease Control and Prevention reports that 1 out of every 6 children in the United States is affected by a developmental disability or disorder (2013).
Some in our community continue to feel that there is stigma attached to having a family member with special needs. If we are to use our own clinic as a sample of the greater Somali community, it is clear that some parents tend to look the other way when informed that their child has a developmental disability. While some families are accepting of such a diagnosis and are keen on assisting their child in any way possible, others deny that there is anything wrong with their child. “There is nothing wrong with my child” is a common refrain I hear from some families whose children have been diagnosed with a developmental disability. For young children with special needs, a common recommendation for parents is to enroll their child in special needs preschool, preschools equipped with various different therapies (including speech therapy and physical therapy). This alone is considered to be shameful and some parents will refuse the recommendation, on grounds that their child is just fine. And yet, these families are the ones who voluntarily seek assistance for their children. What of the countless other families who do not know there are services out there to assist their children? Or worse, families who know there are services, but would rather keep their child at home due to societal stigma around disability?
In order to combat this situation, we should be targeting the misperceptions that exist within our community about disability, which create an environment where some parents of children with disabilities feel ashamed. Being the parent of a special needs child can be a trying and socially isolating experience, even for those parents who have accepted their child’s condition. Some parents do not feel they can attend common social functions with their child (e.g. weddings, the masjid etc.) due to some of their child’s behaviors and will often stay home. These mothers are often exhausted, and are typically in a cycle of caring for their special needs children, while addressing the (innumerable) needs of other children in the home. At times, these mothers are left with little -if any- energy to take care of their own needs, which only worsens the situation. Some parents, mistakenly believing that environmental factors are to blame for their children’s disability, relocate to East Africa believing that their children will spontaneously recover if they are in what is considered to be a more natural environment. Many of these families return several years later to finally receive assistance for their children, when matters have only been exacerbated because of the lack of early intervention.
What can you do?
· Learn about developmental disabilities and become familiar with the resources available to affected children and their families.
· If you have family/community members with a developmentally disabled child, extend your assistance.
· If you are hosting a community event or know of an event, make sure that you are including all families, including families with special needs children.
· Learn about parent support groups and/or advocacy organizations in your community and connect families with them. These groups lobby for the rights of disabled children, provide supports for parents of disabled children and seek to improve societal perceptions of disability.
· If you’re a parent of a disabled child who has a keen understanding for the medical and educational systems, consider starting a parent support group.
· Are you or someone you know apart of Somali media? Encourage them to cover this issue on their radio programs, TV shows, articles etc. Somali media outlets (particularly TV) have played their part in facilitating awareness by hosting parent advocates, which has been helpful in educating our communities and reducing stigma. But more can be done!
· If you’re a concerned community member, an individual with a disability or a family member of a child with a disability, consider taking a training course, designed to teach individuals the skills they need to advocate for themselves. Such courses will teach you everything from how to navigate the school system to how to lobby local politicians to improve laws for the disabled. One example of such an organization is Partners in Policymaking (http://mn.gov/mnddc/pipm/).
I am hopeful that this article will highlight the urgency of increasing awareness of developmental disabilities within our community and providing assistance to families with children with special needs.
References
Developmental Disabilities (2013). Centers for Disease Control and Prevention. Retrieved from
http://www.cdc.gov/ncbddd/developmentaldisabilities/index.html
Organizations (please note: this is not an exhaustive list)
Minneapolis Down Syndrome Support Group: https://www.facebook.com/pages/Minneapolis-Somali-Downs-syndrome-Support-Group/159279504153330
Somali American Autism Support: http://saaswa.webs.com/
Somali American Autism Foundation: http://www.saafmn.org
Somali Autism Awareness: http://www.somaliautismawareness.com/
Somali Autism Foundation: http://www.somaliautismfoundation.com
Somali Disability and Elderly Group: http://sodes.org/
Sirad Shirdon is a Speech-Language Pathologist based out of Ohio. She regularly blogs at theSomaliLiteracyProject.com and can be reached by email at [email protected]