My son was born with a non-apparent disability. Setting aside the outpouring of well-meant, but insulting comments that we received, the most challenging aspect of the early months of my son’s life was the fight to get him the services he both needed, and was entitled to.
When my son was born and we received his diagnosis, we immediately began setting up his support network. However, due to the nature of his disability, in most cases, we were required to ‘prove’ his needs, and in several cases, were rejected because, as a baby, his diagnosis did not prevent him from "age appropriate" behaviors. Imagine for a moment, being in that position. Your child has received a diagnosis with potentially very serious manifestations, but because your child is a baby, you cannot start on a course of action until your child’s disability causes them to fall far behind the milestones chart handed out by pediatricians and dreaded by parents everywhere. What would you do?
In our case, we moved to another state, and thankfully, were able to enroll my son in the services that he needed. Many individuals are not so fortunate. Because state and federal funding to provide services to individuals with special needs cannot cover every individual’s need, in many cases, the severity of a disability (as judged by milestones or other visible, apparent measures) will determine what level of access to resources that an individual will have.
This is not to discount the very real need faced by individuals with apparent disabilities, nor to suggest that any one disability is more deserving of resources than any other. Rather, by bringing to light a system that is burdened by more needs than can possibly be met, the systemic problem of a lack of resources can be acknowledged, and steps can be taken to solve the problem.
The first step toward resolving this problem is by raising awareness for non-apparent and intellectual disabilities. When this is done, those in the position of having to assign resources to individuals will be able to work based on need, rather than diagnosis alone.
In the case of my son, while he certainly needs access to extra resources, we recognize that there are other individuals with disabilities whose needs are far greater than his, and therefore, should receive more resources, regardless of diagnosis.
The ultimate goal then, is to ensure fair access to limited resources, and to work with individuals to provide effective accessibility regardless of what type of disability an individual may have.
It is a difficult thing, struggling to obtain resources when one is an individual (or the guardian of) with non-apparent or intellectual disabilities. While culturally, Americans are trained to be accepting of, and helpful to, individuals with disabilities, there is an inherent bias toward believing that all disabilities manifest themselves in apparent, or physical ways. While the reasons for this bias may be as simple as the old adage that, "seeing is believing," the result of this bias is that a large subset of individuals with disabilities do not receive equal access to resources, at least not without a substantial effort. To ensure access to resources for all individuals, it is important to focus on removing this unconscious bias from the collective consciousness. Only through education can the general population learn enough about non-apparent and intellectual disabilities to start taking positive steps toward creating a social structure where need, not diagnosis, is the determining factor when assigning resources to individuals.
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