But, ultimately, nothing will change unless young and old who oppose the N.R.A. run for office, vote, help someone vote, register someone to vote or help fund someone’s campaign — so we can threaten the same electoral pain as the National Rifle Association, which, according to PolitiFact, spent $203.2 million between 1998 and 2017 funding its candidates, defeating gun control advocates and lobbying. This is not about persuading people with better ideas. We tried that. It’s about generating raw electoral power and pain.
Thomas Friedman has penned a sobering article about the politics of gun control in today’s New York Times. Given the deaths of 17 people at the hands of one student with an AR-15 rifle in Florida, his argument is an important one. Yet as I read it, I realized this article is not actually about guns but rather politics and how “We The People” are heard or not heard.
For me it was a sobering read because of the sadness I feel when I see the faces of those children who died too young at Marjory Stoneman Douglas High School. It was also sad because I was confronted with the reality that there are enormous needs that will go unmet in this country unless we as Americans understand how public policy is made. This had particular resonance with me as a special needs parent, who for over 25 years has had to navigate a world whose priority is not making the lives of those with special needs easy.
Thomas Friedman writes about a courageous young man named Cameron Kasky, a 17-year old student at Marjory Stoneman Douglas High School “who survived last week’s mass shooting,” and according to Mr. Friedman’s reporting, “wrote a beautiful essay for CNN.com that declared: ‘At the end of the day, the students at my school felt one shared experience — our politicians abandoned us by failing to keep guns out of schools. But this time, my classmates and I are going to hold them to account.’”
From this point in the article Mr. Friedman begins to offer all of us a painful civics lesson about how public policy is made. This lesson is one that I hope not only produces change in Washington D.C. on guns but also invigorates advocates of the unheard by teaching us how to change public policy, and so change the world.
Here are the six lessons I learned from his writing that I hope advocates for autism, inclusion, and disabilities in general will enthusiastically embrace, find ways to fund, and actively use.
1) Social Media Alone Won’t Change Things
This fight can’t be won on Twitter or Instagram. They do get people into the streets. But social media have created a world of faux activism — “Hey, I tweeted about it” — that the bad guys take advantage of. The N.R.A. is not just in the chat rooms. It’s in the cloakrooms of Congress and state legislatures. And it’s there with bags of money and votes it uses to reward lawmakers who do its bidding and hurt those who don’t.
One of the great things about the autism and special needs community is that we make powerful use of social media to support each other, inspire and inform about advances, and advocate for our community.
The sobering truth delivered by Mr. Friedman is that this activity will not change public policy. Congress and state legislatures do not make laws based on a Tweet or Instagram post. There must be specific actions taken, five of which I will suggest below completing my six lessons learned from this sobering article about the reality of making public policy.
2) Develop a Dynamic Think Tank
Think tank: The term denotes a group of people who are paid to do nothing but read, discuss, think, and write, usually to address and redress a matter of vital importance to humanity.
Having spent a number of years in Washington D.C., I have learned that the city is not only about money, as Mr. Friedman’s article implied regarding the gun control debate. Our nation’s capital is also about ideas, and think tanks are where ideas come from.
Unless a group of people is working daily on great ideas for continuously improving the lives of those with autism and special needs, there will be nothing to influence congress or state legislatures to do. While there are certainly think tanks addressing these issues, what I am talking about is one that produces policy action and change.
3) Develop a Venture Fund
“You can think of a think tank as a research university blessed with a complete absence of students and where, as a consequence, none of its professors has to teach—all they have to do is research, research, research.”
The autism and special needs community needs a venture fund, not a political action committee (PAC). Let me explain. A venture fund is an investment fund that manages the money of investors who seek private equity stakes in startups with strong growth potential. A political action committee is organized to raise and spend money for the purpose of electing or defeating candidates.
Both a PAC and venture fund advance causes, but only the venture fund invests in building organizations that continually innovate solutions, and that is what the autism and special needs community need. While medical research funded by foundation and government grants is great, we need angel investors who see the societal value of rebuilding the infrastructure of society for the inclusion of those with autism and special needs.
These venture funds could invest in creating inclusive schools, inclusive software, adult Inclusion centers, and the think tanks that can insure their success. My experience teaches me that what venture funds invest in endure much longer than PACs and that they are much more likely to take risks than foundations, the type of risks that change the world.
4) Develop Inclusive Schools
Most Americans with intellectual or developmental disabilities remain shut out of the workforce, despite changing attitudes and billions of dollars spent on government programs to help them. Even when they find work, it’s often part time, in a dead-end job or for pay well below the minimum wage.
Inclusive schools are those that have a deep integration of special needs students with typical students both in and outside of the classroom. This type of engagement means more than toleration of the presence of those with disabilities in a classroom, but also an invitation to or attendance at birthday parties and other meaningful events.
Without inclusive schools there will never be successful workforce inclusion. Unless we all grow up with the disabled involved in our lives when we are young, there will be no motivation to include them when we get older.
5) Develop Inclusive Software and Smart Devices
Only 44 percent of intellectually disabled adults are in the labor force, either employed or looking for work, while just 34 percent are actually working, according to a survey by Special Olympics and conducted by Gallup and the University of Massachusetts at Boston. That compares with 83 percent of non-disabled, working-age adults who are in the workforce.
Something going on in schools and therapeutic programs around the country is the effective use of smartphones, tablets, and the internet with devices like Alexa or Google Home to empower those with special needs.
Inclusive software that runs on smart devices has the capacity to help those with special needs overcome their human limitations. It is overcoming these limitations that will ultimately make a quality life after school and inclusion in the workforce possible.
Until we invest in this type of inclusive software running inclusive devices, the decades of stagnancy including those with disabilities in the workforce will continue.
“The needle has not changed in more than four decades,” said Gary Siperstein, a professor at the University of Massachusetts and one of the authors of the study. “We just can’t move the barometer. And we’ve invested a lot of resources with lots of good programs around the country.”
Inclusive software and inclusive devices can “move the needle” and “barometer.” Nothing will do more to supercharge development of this type of software and hardware than a dynamic think tank feeding ideas to a venture fund capable of funding startups to get this type of work done.
6) Develop Adult Inclusion Centers
Another hurdle is that about 30 percent of intellectually disabled people who work do so in sheltered workshops, where they perform basic tasks but are segregated from non-disabled workers. They can legally be paid less than the minimum wage under a 1938 federal law that allows wages to be based on comparing their productivity level with that of a non-disabled worker.
There is no other word than sad to describe how we handle adults with autism, especially when considering that a 1938 law allows them to be paid less. I can certainly understand why we would want to give employers a benefit, but the lack of dignity involved with being paid less is reflective of our failure to grasp what true inclusion means.
These “sheltered workshops” remind me of a “warehousing mentality,” where the ultimate goal is to put those with disabilities away and out of site. Regardless of whether this is the intent, once again it reflects a failure to grasp the true meaning and importance of inclusion.
Disability rights advocates call these workshops outdated and say it’s discriminatory to pay them less than other workers. Critics say they don’t do enough to build skills or help transition intellectually disabled workers into a mainstream work setting.
The failure of our current system to provide a fair wage or appropriately inclusive work setting for those with disabilities is one of the reasons I believe we need adult inclusion centers. These centers would have as their goal the development of life skills as well as training with inclusive smart devices to augment those skills and help them overcome their human limits. Additionally, the centers could assist in matching each individual with a job they can do, so that not only would each adult not be left sitting at home, but they would be engaged in a job providing both a wage and dignity as well. These adult inclusion centers are a better solution to our current problem than the following defense of the status quo:
Defenders argue that thousands of severely disabled people would be left sitting at home without the carefully structured environments. Of the 420,000 disabled people who work at sheltered workshops, only 5 percent ever leave for other jobs alongside non-disabled workers.
In conclusion, while I believe America has one of the best, if not the best, system of support and care for those with special needs in the world, its weaknesses become glaringly obvious when adulthood arrives. We should not allow the decades of progress to cause us to become satisfied and stop, because families, children, and adults continue to suffer every day due to the gaps and weaknesses in the system.
Writing might not change things today, but just as young people are marching courageously for gun control (and seem to be succeeding), perhaps inspired citizens will join our community to advocate for public policy changes on behalf of those with special needs.