Neurodiversity and Government Advocacy
Thoughts for William & Mary neurodiversity class, March 14, 2018 . . .
What is government
advocacy?
The most common form of government advocacy advances the
goals of groups, which may be membership organizations, corporations, foreign governments, or other groups before our government (either state or federal.) Advocates
may be professional lobbyists, lawyers, or concerned members of affected
groups.
Advocates use their knowledge of issues, relationships, and experience
in government to advance their agendas.
In many cases they compete with – or are opposed by – other advocates
with different agendas.
Often members of a group have divergent or mutually exclusive goals. Other times totally different
groups focus on a single issue with identical approaches and objectives.
Most times, the group doing the advocacy defines itself and
the advocacy. Other times, the central
government defines the group, and seeks representatives.
There is another form of advocacy within our legal
system. In that, individuals or groups
advance their agendas through or on behalf of individual defendants or
plaintiffs.
Are there other forms of government advocacy, and if so,
what are they?
What can government
do for the community of Neurodivergent people?
Government can do many things at the request of
advocates. Among other things, it can .
. .
- Conduct research to find solutions to problems,
- Study and develop medical treatments,
- Institute protections from discrimination or marginalization,
- Encourage employment of disadvantaged groups,
- Provide protections, legal, physical, environmental, and other,
- Directly employ members of a group in government service,
- Provide housing, sustenance, and support to needy groups
Through legal advocacy, government can be encouraged to do a better job of sheltering us from harm, making our lives more comfortable, keeping us safe, granting us relief, or extending compassion or mercy in criminal
sentencing.
How does
neurodiversity fit in?
With respect to neurodiversity, there is no recognized group
as regards government advocacy. That’s
because neurodiversity is only a concept. It’s not a defined medical condition
needing treatment. It’s not a defined population needing benefits or services.
It’s not a recognized group needing legislative protection.
Rather, the concept of neurodiversity is that there is a
subgroup of humanity who have inborn neurological differences that make them
cognitively different from “typical” humans.
These neurodivergent individuals learn differently, process information differently,
and think and solve problems via different pathways. Compared to typical people they exhibit a mix
of disability and exceptionality.
The most widely recognized neurological difference is ADHD. The
next most common are OCD, Dyslexia, and Autism. Most (but not all) people
outgrow or learn to manage the first three conditions by adulthood, so there is
not a large call for adult research or support.
Many autistic people have some level of lifelong disability severe
enough to require support. Autism is the
most visibly disabling of the neurological differences.
No government agency I know of recognizes neurodiversity as a movement or group with which they would engage in dialogue, or support. Rather, the government recognizes and supports the constituent groups who make up the neurodivergent community. This includes autistic people and their families, the ADHD community, folks with dyslexia, and the cognitive disability community more generally.
We may think of neurological diversity as conferring a mix of disability and exceptionality but in general the government only provides support and services to people with disabilities.
Who advocates for neurodivergent
people?
Advocacy groups like the Autistic Self Advocacy Network, the
Autism Society, the Simons Foundation, and Autism Speaks advocate for autistic people,
but from different perspectives.
Groups like The Arc and Easter Seals advocate for
neurodivergent people in the context of advocating for all people with
cognitive disabilities or all people with disabilities.
Affected and concerned individuals advocate for specific
medical conditions before our public health agencies (NIH, CDC, DOD.)
Attorneys, medical professionals and (only very recently) qualified
affected individuals advocate for neurodivergent individuals in the legal
system.
Why do people
advocate in the neurodiversity realm?
Each advocacy group has its own agenda. Sometimes their advocacy is broad and deep with respect to our community. Other times it is very narrow.
The original neurodiversity advocates were the parents who advocated for educational, living, and employment supports for their neurodivergent children.
The original neurodiversity advocates were the parents who advocated for educational, living, and employment supports for their neurodivergent children.
- When we talk about advocacy for, say, autistic people . . . should parents be recognized as part of the community?
- In this example, should teachers, doctors, and others who help and support autistics be part of the community?
The population of children diagnosed with neurodivergent conditions
has exploded since the 1990s. The first
generation of those children have reached adulthood and some have emerged as
advocates. Some neurodivergent members
of prior generations are also advocates.
- How might the pre and post 90s’ generations of neurodivergent people differ in views and advocacy?
- How and why might the opinions or goals of parents and children diverge?
- When parents and children have divergent opinions, whose should be primary?
Educators have been overwhelmed by the surge in students
needing special education services and accommodations. They advocate for better support tools and
financial support. They may also
advocate for injunctive relief from burdens imposed by government regulations
they feel unable to meet.
Medical professionals advocate for research to identify the
needs of neurodivergent people. This is
an emerging trend.
More traditionally, medical professionals assumed they knew
or could personally determine what was needed to help neurodivergent people,
and they advocated for research or other support to do so.
Medical corporations advocate for support and protection to
encourage or enable the development of medications and treatment devices.
- What are some examples of government supporting the development of medications?
- What are some examples of government protecting corporations who develop medications or treatments?
- Should government take a role supporting or protecting corporations? Why or why not?
Individual government agencies have ideas that impact the
neurodivergent population. They often state positions and then engage the
public to defend or revise those positions. What would be some examples?
- Should the armed forces ban people with autism and ADHD?
- Should the rules that govern six college students renting rooms in a house differ from the rules for six cognitively disabled people living in a similar house?
When advocates approach the government to advance their
views, how should government balance the goals of affected individuals who
advocate for themselves or their groups, versus representatives of
corporations?
- If, as some have suggested, corporations are people in a legal sense, how do we balance their vastly greater lobbying resources against the concerns of individuals?
- The Citizens United case is often cited in the context of corporate influence over elections. Are elections a unique situation or is there actually a broader issue of corporate versus individual influence over government policy making?
- A corporation and an individual are clearly different, right? Merck pharmaceuticals is different from John Smith who takes Merck-made drugs. He and Merck may advocate for different things, or the same thing. If we distinguish between corporate and individual advocacy, on which side should we place advocacy from groups like autism societies, or educator’s associations?
- Should there be a qualification process for a potential advocate? Is there a process?
- When an advocate speaks for a community, what is the moral imperative to advocate for the best of all, as opposed to what's best for the advocate?
- Assuming an advocate is a qualified member of a community (a diagnosed autistic person on an autism committee, or a recognized member of a tribe on an Indian affairs committee) does the advocate have a duty to gain a special understanding of issues, or is general life experience enough?
How would a William & Mary grad get into advocacy,
either as a career, a personal passion, or both?
- Careers in government,
- Working for political consulting, public relations, or law firms that engage in lobbying,
- Working for think tanks that generate research to inform lobbying (such firms share the building housing the W&M Washington DC campus),
- Volunteering as an individual representative of a community to government,
- Working as a group representative for community before government,
- Expressing ideas which shape public policy through mass media
Interested in getting involved yourself?
Thoughts on advocacy from Britains National Autistic Society
Here are policy advocacy toolkits from the Autistic Self Advocacy Network
This blog talks about research at the Dept. of Defense and how you could get involved
The IACC (the federal autism committee) welcomes the public to its meetings by webcast or in person, and makes all records available online
(c) 2018 John Elder Robison
The opinions expressed here are his own. There is no warranty expressed or implied. While reading this essay will give you food for thought, actually printing and eating it may make you sick.
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