Can Inclusion be Exclusion?
Is it possible that the big umbrella of “Inclusivity” cannot, at times, capture the numbers of individuals trying to squeeze under it? That it simply cannot be broad enough to keep everyone dry, and that many people at the fringes will get wet? Is the attempt to be “all inclusive”, exclusionary? Many Square Peg Society members have felt that because they are “not disabled enough”, they are either not eligible for services, or the services offered to them do not meet their goals.
What Independence means to Our Members
Square Peg Society exists because its members feel that there is no other agency that specifically addresses their interests. So, what are those interests? Our members (supported by their families) have the goal of being fully independent. This means that they want to be fully self-sufficient on all aspects of adult life: employment that sustains them, and the post-secondary education & training to find and keep this employment, housing that they can afford, and which takes into account their quirky Aspie characteristics, the understanding and management of their own finances, and the development of sufficient life and social skills to keep themselves clean, nourished, and – most importantly – socially integrated. These are the hopes and goals of our families, and it is our agenda to support them in achieving these goals.
As our individuals are not “neurotypical”, achieving these goals is, for us, as challenging as any other ways of providing “a good life” that other families with members with disabilities would face. This requires examining and teaching awareness to our supported people about these issues that might be obvious to people without developmental disabilities, and then teaching and practicing coping strategies for dealing with these aspects of life. Supporting them requires expertise, time and patience, and is made especially difficult without funding for the much-needed support and expertise. This is the “independence” that most of our families are seeking. This concept of independence is not necessarily the same for all people with disabilities, and therefore, the paths to achieving ii may also be different.
Common Ground
There are also many commonalities, human rights, really, that we all need to support. Everyone should have the right to a safe & secure home, economic stability, a “purposeful” existence, (where they are challenged, engaged, and where their contributions are valued), and to be loved and respected. Dividing into factions based upon level of ability or disability is simply an extension of other forms of discrimination, and ultimately, makes an accepting, inclusive society impossible.
Services for All Needs?
Often people say – the need is huge; we cannot provide services for everyone! Surely, if we are to live in a compassionate, human society we cannot ignore a segment of the population that, with help at a young enough age, can be largely self- supporting members in their communities! We cannot dismiss this group because other people’s needs are greater! That would be equivalent to arguing that homegrown homelessness should be eradicated before refugees from other parts of the world are given aid. Again, if we are to retain our humanity, we cannot ignore the plight of others elsewhere in the world, and must find a way to do both.
Doing it All
In doing as much as possible with limited funds, we need to understand each other, to find areas of commonality, and to build alliances, so that programs , information, and resources are shared, to avoid duplication, and to serve more people that each of us could, working alone. We need to continue to push for access to services based upon need, rather than a “qualifying diagnosis”. We need recognition that conditions such as anxiety and depression occur across disabilities, and should not continue to be regarded as mental health only issues. Square Peg Members have told me that these conditions are often a bigger impediment to them than Asperger’s or Autism. Workshops and counselling for these issues, as well as for life & social skills, could be provided, in part at least, collectively. However, just as younger people with high support needs are, quite rightly, asking for age-appropriate programs and activities, rather than almost exclusively being in activities with older people; Square Peg members also feel that, at times, “the Big Umbrella” may not serve us well. There may be situations when our members will want or need different or additional program content that would better prepare them for the jobs they aspire to, or would enable them to develop and keep relationships with peers. As their spokesperson, I need to be able to speak freely on their behalf, when, and if, I see that our Aspies need something other than, or in addition to, what is defined by the Big Umbrella.
The Path to Inclusion
The path to inclusion is through lots of exposure to one another in community, without the subjugation of anyone’s goals. For our part, I will continue to urge that our group, exchange and interact with the broad community of people with disabilities, as well as with neuro-typicals, and that in our behavior we foster an attitude of acceptance and respect.