Approximately 1 in 54 children is diagnosed with autism spectrum disorder in the United States, according to the Centers for Disease Control and Prevention (CDC), and as many as 1 in 4 adults has some form of disability. Regardless of whether a person has a hidden or physically visible disability, societal barriers continue to exist, preventing successful inclusion of all.
Heather: “Inclusion…it’s a neurotypical problem that became my problem. If I don’t fit in, as I am supposed to, I put a giant target on my back. It’s exhausting.”
Heather’s Mom: “I have often felt that my ‘ask’ of society is only that my daughter be treated with dignity and kindness…for people to look at her when she speaks…for people to listen when she speaks. From my perspective, what has become painfully obvious as I think about Heather’s journey, compared to that of my three other children, is how hard she has had to fight to make a ‘place at the table’ for herself. This has ranged from the more obvious school experiences into all spaces in society…as if she is always being put in a position of needing to legitimize who she is and what she is asking of us. A recent doctor’s visit encapsulates an all too common experience. As we stand to go into the appointment, the nurse asks Heather, ‘Does your Mom really need to come in with you?’ Heather replies, ‘Yes.’ We sit in the exam room, Heather responds to a variety of questions from the doctor and asks the doctor questions from her prepared list. The doctor looks at me and asks, ‘Is the autism a legit diagnosis?’ In just a matter of seconds, Heather is ‘othered’— a woman who is intelligent, articulate, who writes poetry, who is a sign language major in community college, and who lives independently in her own apartment.
Heather: “When I was little, I thought, ‘What’s wrong with me?’ Now, at 29, I think, ‘What’s wrong with you?’ To be ‘othered’ is so demeaning…like I am invisible.”
Heather’s journey is one of many that highlights the tireless efforts needed to simply feel included in a society that favors something different. This begs the question as to how we can be inclusive, not just as schools or agencies, but as people in the community. How can we adjust our mentality in a way that would allow for others to feel just as comfortable as many do across community settings, such as at the doctor’s office? How can we, as individuals, be inclusive?
Redefining Disability
Prior to the 1970s, disability was largely viewed within a medical model, defined as something that exists in a person’s body that requires treatment; an indicator that something wrong needs to be fixed. However, this notion was challenged by the life experiences of people with disabilities as a result of constant oppression, discrimination, and exclusion.
Consistent with this mentality, the social model of disability emerged, which redefines disability as less related to a person’s actual condition, and more connected to that person with an impairment attempting to live in a world created for others, rather than for everyone. For example, for a person using a wheelchair, it is not the inability to walk that holds the person back from accessing a space, it is simply the stairs that limit the accessibility.
The social model of disability has been critiqued, separated into other models, and extended over the past 40 years, but generally remains the most popular framework for understanding disability in the context of inclusion.
Integration or Inclusion
Given an understanding of the social model of disability, inclusion then becomes the vehicle by which this mindset is employed. Inclusion should not be equated to integration. These two terms are often used synonymously – this is a mistake. Integration focuses on physical bodies intermingling in the same setting. Of course, an integrated model would also incorporate needed adaptations for those with disabilities to participate, but rather than incorporating an outside group into an already established scenario, inclusion creates an environment designed for equal opportunity. The effort is not about treating everyone the same; the emphasis is on embracing differences, and being prepared to do so.
Successful community inclusion allows full participation in all activities, with varying aids available to support the range of differences across ALL people. If we commit to this way of being, we need to adopt the mindset of inclusion, ensuring our thoughts, actions, and behaviors are consistent. We need to be actively inclusive.
How does one commit to being actively inclusive? Starting points include:
- Notice your bias.
Notice the thoughts that pop into your head when thinking of disability. How do you speak of disability? How do you support equality? Maybe an immediate concern enters your head when you think of disability, one of sympathy? Perhaps, the words strong or brave come to mind. Consciously explore the ideas and assumptions that you hold and ask yourself if these ideas are leading to a mentality of equality, or wrongfully categorizing a group of people. If you are able to identify the thoughts that continue to contribute to exclusion, you can challenge these ideas and create new beliefs. - Adjust your thoughts and words.
Listen to the experiences of people with disabilities. Put effort into understanding how to be an actively inclusive individual. Learn about what this means to others, and how to show your commitment to the community. In many accounts of people with disabilities, common themes surface, such as being treated as inferior and/or with the assumption of being special heroes. In adjusting your thoughts, and the words that follow, you are not only changing the way you think and talk about disability and inclusion, you are also modeling and teaching this way of being to others.
- Look for opportunities to create an inclusive environment, everywhere you go.
Recently, a parent described her experience in the grocery store with her daughter diagnosed with autism. She noticed another parent staring, and quickly shifted to a protective stance – a situation that has occurred so often that she noted generally avoiding grocery stores. If any one of us stands in silence, the room for interpretation is immense, with the general assumption that there is a lack of interest in interacting, accompanied by judgement. Decide to do something different in this situation. Start by saying hello, introducing yourself, asking the child her name and how she is doing. If communication is a barrier, ask how to best communicate. For the parent with the child with a disability, take the opportunity to teach others how to be inclusive, simply by sharing that saying hello is ok.
As inclusion continues to evolve toward being viewed as a right and a responsibility across settings, commit to do your part in being actively inclusive. With the support of the Developmental Disabilities Planning Council (DDPC), The Kelberman Center has been allowed the opportunity to team with other organizations in creating inclusive environments, including the YMCA of CNY, Fitness Mill, Delta Lake Camp and Conference Center, Eye Studio, Blessed Sacrament, and the Everson Museum. We are currently accepting applications for Year 3 funding in Oneida County (more information can be found on our website, kelbermancenter.org, under the social inclusion initiative).
Together, as a community, we can strive to move toward true inclusion, where all have equal opportunity. The Kelberman Center continues to focus on supporting active inclusion, both at the individual level and as an agency, always striving to do better. We can all do better, and we are better together.
Dr. Leah Phaneuf is chief clinical officer at The Kelberman Center.
The Kelberman Center provides comprehensive programming for people with autism and related intellectual/developmental disabilities and their families. With two locations, Utica and Syracuse, a range of clinical, educational, residential, as well as home- and community-based services are offered across the lifespan to best enhance supports and opportunities for the people we support and their families. For more information, please visit our website at kelbermancenter.org.
