ASANs Past Abuse and Moving Forward
With Ari Ne’eman’s announcement that he will be stepping down at the end of the year today, I knew I was out of time to find a large source to post what you are about to read. Please share it far and wide so that the Autistic community can know what ASAN has done and continues to do. We must not allow the abuse to continue.
Ableism, pronounced ˈābəˌlizəm, noun – discrimination in favor of able-bodied people.
While disabled activists work tirelessly to create a world where disabled people don’t have to face ableism, it’s pretty much expected to occur on a daily basis. Even in places where ableism should not exist, it can run rampant. Institutional bias, workplace cultures, these structures can easily keep ableism hidden from the public eye even in those companies or organizations where ableism should be the least of a person’s worries.
Such is the case with the Autistic Self Advocacy Network (ASAN). The nation’s leading Autistic-run organization has only been in existence for 10 years and in 2011 gained their 501(c)(3) nonprofit status. In that year, ASAN hired its first four staff members, including Ari Ne’eman, the organization’s self-appointed president. It would be easy to suggest that this is when the abuse, inaccessibility and exploitation started. The truth is, the bias started before then with chapters that would startup and shutdown. The truth is these first employees, in the end, are who helped to reveal the pattern.
I was one of these first hires and the one to last the longest. In September 2013, I quit after being threatened with being fired. There were definitely grounds to fire me. As with many Autistic people, when under a great deal of stress, meltdowns can occur. Rather than meet these outbursts as communication like ASAN will typically tell employers, teachers and professionals to do, the meltdowns were quickly met with punitive measures. I continually stated my needs for particular accommodations and a decreased workload.
It would be easy to discount me as one disgruntled former employee, but the truth is, I’m only one of several staff members to have either quit or been fired due to this toxic work environment. This doesn’t include the countless volunteers and chapter leaders that also often cite the same problems.
With no way to formally ask for accommodations, no channels to assure that they are given due consideration, staff often is left to the whim of senior staff. Complaints have to be brought directly to the supervisors they are lobbied against as there was no structure to speak to an unbiased third party. Unfortunately, this only drives most staff members to give up requesting accommodations even when new needs arose.
Are accommodations alone enough to call an organization toxic? Not at all. This is only a tip of the iceberg. The story of ASAN starts with the first chapters of the organization. Take one chapter that broke off from ASAN after the chapter leader was bullied during a protest. Another who in 8 years has had 5 chapter leaders and is now defunct. It was to be the flagship subsidiary after federal grant money was awarded to turn it into a non-profit organization. Most chapters will never see any significant guidance from the national organization. Of those that do gain membership and become successful, most will be asked to volunteer their time and energy to participate in grants they will never directly benefit from. Most will not be reimbursed for money they spend on banners, Meetup sites, photocopies and many other necessities to running an ASAN chapter. This leaves an already vulnerable, economically-disadvantaged population more destitute.
While it can be argued that a young organization is going to have growing pains and lack funding sources, the question one must ask is why these practices continue. Are only economically advantaged autistic people expected to run a chapter? And why has an organization that’s drastically increased its revenue not hired staff to support their autistic chapter leaders? These chapters after all are on the front lines in serving the autistic population the organization purports to represent.
How do these practices, the exploitation and inaccessibility, continue? The simple answer is silence. The ingrained culture of silence and silencing techniques are the guiding principle. There’s a fear that is embedded into each autistic person who works for the organization whether as a volunteer or an employee. This fear starts with senior staff befriending employees and volunteers. Then those friendships are twisted and manipulated to get what the organization needs.
What the organization needs most though is silence. Have a Facebook page? Don’t you dare post anything contrary to the organization’s held beliefs. That’s not what we should represent to the community. Disagree with the lack of minority representation? Bring it up at your own cost. If you bring it up often enough, you may be appeased by bringing on board a token minority. In a few months, or maybe a year, those minorities will be gone anyways.
Most of all, do not criticize any decisions handed down from the top ranks. You don’t want to give ammunition to the enemy. If you speak up, you will destroy the organization’s image. No one will trust Autistics again. You will kill the movement! All the hard work you’ve put in will be for naught because dissent shows Autistic people are not united, are not a cohesive community.
College dropouts are the best workers.
What seemed at the time a joke I figured out years later was a way of reminding his staff they had nowhere else to go. You didn’t have the degree or skills to work elsewhere. You couldn’t live without the job, if you call choosing between rent or health care living.
Other bullying and abusive techniques are so much clearer to me now. Like the use of triangulation to pit employees against each other and character assassinations as they got rid of others were common practice. Even erasing former employees from the work they had accomplished.
I thought being an abuse survivor I would be able to recognize these things, but I didn’t. Not until it was too late. My family, my husband and kids, had moved halfway across the country on the words of this organization. Away from friends and family. The cause was definitely worth it. The work we were doing was making an impact on policy. And we were helping change autistic young adults lives. The message about autism stopped looking so bleak.
But the price to my personhood, the price to the people I was complicit in exploiting, was far too high. Then in the end, I was expendable. My accommodations were not met. My abuser got to start with his character assassination of me. I turned to the board hoping to enact change to help those that came after me. It was the only thing I knew to do.
After that week, I reached out to other former employees, former people that had been affiliated with ASAN. The picture became clear, this had happened to other people. This wasn’t just me. It was a revelation.
I was sure though that my letter to the board was going to cause a change. I kept a small eye on the website and Facebook for ASAN. They hired some of the positions I suggested to distribute the workload. They were expanding to include more than the easily recognizable people in the Autistic community.
But then it happened. Staff changed suddenly. New staff was brought on. Then it happened again. For an organization that’s only been employing people for 5 years, you’d expect to see some turn around. But many staff members don’t last for more than a year, though.
I started asking. Telling my story. Explaining the tactics that were employed on me. It’s been 3 years, but the wounds are still so deep. But I’m tired of being silent.
Then suddenly, more former staff and more volunteers reach out. They had similar things happen to them. They’ve seen the same patterns. I promised not to disclose any of them here as people are still afraid. As fresh as my wounds are, theirs are even more so.
People who were fired because of an inaccessible work place. People who hide from even the letters ASAN because it triggers massive amounts of anxiety. People who became homeless because they were bullied and stressed so far that they could no longer do the job.
I was the lucky one. I had the privilege of a husband and a place to return in my home state. I’ve been able to collect myself and process what has occurred to me from the safety of my home. But the others? Most do not have that luck. And so they continue to suffer in silence. All so an organization can condemn those that do what they do.
So what am I asking? I’m not asking for anyone to withdraw their support of the nation’s leading Autistic organization. I’m not even asking that people stop donating to them. I am asking that there be accountability to the Autistic community. I’m asking that ASAN should have their membership vote on its president and board members. I’m asking that the Board of Trustees should appoint a non-staff member to be a liaison for staff issues. I’m asking that every single person who becomes involved with ASAN should know what they’re getting into before they join as a volunteer or staff member. Finally, and most importantly, I’m demanding ASAN pay their staff members a livable wage for a job with proper accommodations for their particular traits and disabilities.
What I ask is that every community member demand these changes as well. Not for my sake or those who have been railroaded before me, but for those who come after all of us. Each year, ASAN brings on new staff that are unknowing and unsuspecting of the problems within. These people have a right to know and a right to not suffer the same abuse, bullying and eventual abandonment.