The Urgency of Inclusion

I spent the last weekend in July wrestling with a torrent of strong emotions:  unexpected optimism about the future, the deep sense of comfort and belonging that comes from being in a truly inclusive environment, and a profound sense that all of us, starting with me, need to participate more actively in building inclusive communities.  This has been a multi-year journey for me, but so much of it was crystallized by what I learned from the speakers and participants at the 2022 Motormorphosis conference in Herndon, Virginia, hosted by I-ASC (the International Association for Spelling as Communication).  Here are some of my take-aways:

Inclusion is too rare.  Three different speakers (two autistics and one presumed neurotypical) commented on how wonderful it was to be in a setting where autistic people were not asked to mask or rein in autistic behaviors to participate in the conference.  There was stimming, there was pacing, there were involuntary vocalizations, there was rocking in place, and people left and re-entered the conference room as they needed.  And none of it took away from the learning. Yet many people remarked that it was the first time they had experienced such a welcoming environment.

Autistic voices are needed to shape policy, research agendas, and other important topics.  We were repeatedly reminded that autistic voices, especially the opinions of nonspeaking autistics, are missing from critical discussions.   Autistic journalist Eric Michael Garcia, author of the wonderful book We Are Not Broken, talked about how early in his career he was focused on politics and economics, but ultimately was compelled to write more about disability policy because of the lack of autistic voices in that space. Several university researchers commented during a panel discussion on what they have learned by including autistic individuals, speaking and nonspeaking, in more participatory approaches to research.  Four state legislators from Virginia commented that it is essential for nonspeakers and other autistics to connect with their elected representatives to share their stories and help shape solutions to the challenges they face.

There is a high human cost to excluding people.  Leaders at New York nonprofit CrimsonRise highlighted the heartbreak of nonspeakers who ride an emotional rollercoaster from experiencing the joy of finally being able to communicate to the crushing realization that few people are listening to what they have to say, and some are even actively trying to silence their voices.  One researcher mentioned the 2010 study from Brigham Young University that found that weak social connections can shorten a person’s life by roughly 15 years, which is about the same health risk as comes from smoking 15 cigarettes a day.

Inclusion benefits everyone, not just disabled people.  We saw a tweet from disability rights icon Judy Heumann to rising star Hari Srinivasan, a minimally speaking autistic who recently graduated with honors from UC Berkeley and won a fellowship to pursue his PhD in neuroscience at Vanderbilt University.  She said “Congratulations @HariSri108 for the fantastic work you have done and the contributions you will continue to make throughout your lifetime.  Our entire society benefits from your brilliance.”   I was heartened to know that the rising generation seems to get this:  Nonspeaking autistics Hari, Elizabeth Bonker, and Dan Bergmann were each selected by their classmates to deliver commencement speeches at their respective universities –  UC Berkeley Psychology Dept. , Rollins College, and Harvard Extension School.   While students at those colleges and universities, they were repeatedly told by their professors that they enjoyed having them in class and felt that everyone, including the professors themselves, benefited from hearing their insights.   Similarly, three researchers at different universities participating in a panel discussion echoed this sentiment, stating that they had learned much from their collaborations with nonspeaking autistics.   One of them had previously elaborated on what he’s learned in an interview with The Thinking Person’s Guide to Autism earlier this year. More generally, study after study has shown that inclusive classrooms in grades K-12 benefit ALL students, not just those with disabilities. (I also should note that several nonspeakers read earlier drafts of this post and offered helpful suggestions as to how to improve it.  I’m grateful for their contributions, and any remaining errors or omissions are mine.)

Inclusion is the law of the land.  Seasoned advocates reminded the parents in attendance that disabled people do not need to “earn their way in” to mainstream education or housing opportunities.  Laws such as the Individuals with Disabilities Education Act, Section 504, and the Americans with Disabilities Act were passed to guarantee equal rights to individuals with disabilities.  Sadly, as we celebrate the 32nd anniversary of the ADA, disabled people must still regularly invest significant time and financial resources in litigation to enforce these rights.

So what do we do about it?   I certainly don’t have all the answers, but for those like me who would like to do more to build inclusive communities, here are a few things that I’ve learned from disabled people and allies who have been at this for a long time.

  • We need a massive shift in mindset.   This will require, among other things:
    1. Centering the voices of autistics and other disabled people.
      1. Learn as much as you can about what they think is necessary to create a more inclusive world. Internet sites such as Neuroclastic and Facebook pages such as Fidgets and Fries do a fantastic job of providing autistic people’s perspectives.
      2. Support nonprofits that are led by disabled advocates: Autistic Self-Advocacy Network  (ASAN), CommunicationFIRST, Communication 4 ALL  (C4A), and the I-ASC Spellers & Allies Advocacy Network, all have helped me understand how I can better support inclusion.  There are many more organizations like these out there that need our support.
  • If you are a researcher, adopt a participatory action model that includes disabled people in all phases of research – from identifying priorities through design, recruitment, and data collection, all the way through interpretation and sharing of results – as collaborators, not just subjects.
  1. Designing approaches that are “inclusive by default” rather than making inclusion the rare exception it is today. As the advocates at the conference stressed, no one should have to “earn their way in” to mainstream education and housing.  Hari Srinivasan reminded us of the dangers of having low expectations for disabled people.    This also means that we must think about who is “not in the room.”  I’m not sure who coined this phrase, but I learned it from special education teacher and inclusion advocate extraordinaire Shelley Moore.  It’s not enough to think about how we can allow those already present to participate more fully but we also need to consider who is still excluded and why.  Are there physical barriers, including sensory ones, to their participation?  Or have they just not been invited?  Or have they been explicitly excluded because of assumptions about their capabilities?
  2. Resetting social norms to be more inclusive. For example, so many of us have the unspoken assumption that eye contact equals respect, engagement, and attention.  But autistic people have been telling us for years that, for some, eye contact leads to sensory overload and that they can be more attentive if they don’t have to look at the person who is speaking.  Similarly, being in movement does not always signal distraction.  Again, for some people, movement is necessary to process information or to manage anxiety.  In general, we all need to reject the unspoken idea that someone’s appearance  – movements associated with autism, physical characteristics associated with Down syndrome or cerebral palsy, or anything else – is an indication of their intelligence, creativity, or simple worth and right to dignity.
  3. Recognizing that we need to give people BOTH support and opportunities to be successful. Too often, these choices are viewed as binary, with people labeled “high functioning” getting opportunities but no support and people labeled “low functioning” getting support but no opportunities.   Both of those outcomes do a disservice to individuals AND to the communities who don’t get the benefit of their full participation.
  • We must clarify and enforce existing laws. Our institutions of higher learning such as Berkeley, Harvard, Oberlin, Tulane, and others have shown that nonspeaking autistics can be successful in and make larger contributions to academic communities.  Yet, many public schools are actively preventing students from accessing the same accommodations (e.g., letterboards, handheld keyboards, and trained communication and regulation partners) at the K-12 level.  We need the Department of Justice and the Department of Education to enforce their explicit guidance that reasonable accommodations for effective communication can include the support of staff trained in the specific needs of each individual.  In other words, blanket exclusion of these accommodations is a violation of federal law. If there is a dispute about the effectiveness of an individual’s preferred method of communication, the opinions of the individuals themselves or of qualified professionals who have specifically observed disabled individuals communicating cannot be overruled by general opinions of credentialing organizations.  Professor Michael Stein, the cofounder and Executive Director of the Harvard Law School Project on Disability (HPOD) and a visiting professor at Harvard Law School since 2005, is considered one of the world’s leading experts on disability law and policy.  He was instrumental in drafting the United Nations Convention on the Rights of Persons with Disabilities (CRPD).  He reports that “CRPD structurally recognizes persons with disabilities as experts about their own lives. As such, both the letter and spirit of the CRPD privilege individuals’ preferences over those of professionals, however well-intentioned. Starting with its general principles, its provisions repeatedly validate that persons with disabilities have a right to choose their own destinies, whether that’s with regard to where they live, how they move, how they learn, what health care they access, how they vote, or how they express themselves, regardless of whether persons with disabilities use complex or nonstandard forms of communication.” Today, these battles are being fought all over the country at great personal and financial costs to students and their families.    Families who obtain these types of accommodations for students are often bound by nondisclosure agreements that prevent them from sharing successful strategies with other families.
  • We must share best practices without being afraid to innovate. We need more and better publicized repositories of successful strategies for promoting inclusion in all kinds of settings:  school, the workplace, housing, volunteer organizations, healthcare facilities, government agencies, and so forth.  Let’s make a commitment to teaching and learning from one another more actively to accelerate the building of more inclusive communities.  Here are some places you can go to get some initial ideas:
    1. School resources: The Nora Project
    2. Workplace resources: Job Accommodations Network
    3. Housing resources: Our Stomping Ground
    4. Healthcare resources: Jefferson Center for Autism and Neurodiversity

Let’s work together to make this list longer.  Please feel free to add the names of other resources or suggestions for building inclusive communities in the comments.  But let’s not forget that we are in the very early stages here.  Just because something hasn’t been tried before doesn’t mean it won’t work.  Experiment (especially based on the suggestions of disabled people), learn, adjust, and share.

  • If you aren’t going to help, at least get out of the way. The American Speech-Language-Hearing Association (ASHA) has taken the position that communication methods employed by many nonspeakers should not be allowed due to the risk of influence by support personnel.  Many school districts have used these position statements as a reason to refuse accommodations.  A small but vocal group of individuals take every opportunity to personally attack, defame, and attempt to discredit any disabled person who uses these methods.  The risk of influence is real, and nearly all programs that leverage these methods explicitly address the issue of how to mitigate the risk of influence when training new practitioners.  But just because influence can occur does not mean that it always does, and it shouldn’t when communication partners are trained well.  Enough people have used these methods in rigorous settings, including as members of the US government’s Interagency Autism Coordinating Committee, that now it is clear assisted forms of communication are effective for some individuals.  Given that fact, each case must be decided on its own merits, and there can be no justification for blanket rejections of any given methodology.  I call on ASHA to withdraw or significantly modify its position statements accordingly.
  • The time is now. The cost of further delay is incalculable.

To quote Eric Garcia, “Autistic people’s success is not an accident; it is a policy choice.  It’s not a story of rugged individualism; it’s the story of a society that has made deliberate choices.”

 

Jennifer Binder-Le Pape lives outside of Philly with family.  She’s a strategy consultant by day and an ally-CRP in other waking hours.  She is immensely grateful to all of the nonspeakers who have widened her perspective over the last few years!

 

 

 

 

 

The mission of I-ASC is to advance communication access for nonspeaking individuals globally through training, education, advocacy, and research.  I-ASC supports all forms of augmentative and alternative communication (AAC) with a focus on methods of spelling and typing. I-ASC currently offers Practitioner training in Spelling to Communicate (S2C)with the hope that other methods of AAC using spelling or typing will join our association

 

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