We are honored to present a guest blog by attorney “Parents Have the Power to Make Special Education Work.” The following is a transcript of his remarks to the Council of Parent Attorneys and Advocates (COPAA) annual special education advocacy conference. The occasion was his acceptance of the Diane Lipton Award for Outstanding Advocacy. The title of his presentation was: “Advocating over the Long Haul: Handling Stress and Staying in the Game.”
I am so pleased to have this award from COPAA. I have loved watching this very special organization grow into a robust resource for families whose children struggle in school, and their advocates and attorneys.
COPAA stands tall, manifesting the great power that can be exercised through organizing people with widely varying interests around a common mission at a national level.
COPAA educates and trains in special education law, fights to sustain and advance those rights, and speaks truth to power both directly at all levels of government, and indirectly through COPAA’s many trainees, as they assist parents in the clinches of Team meetings, negotiations with school districts and due process hearings.
Every state should have a comparable local organization – as Massachusetts does in its Federation for Children with Special Needs, the Mass. Advocates for Children, the Disability Law Center and others – but having COPAA so powerfully active at the national level provides an indispensable resource that greatly enhances the effectiveness of state organizations.
As for me, beginning with my position with the Massachusetts Legislature’s education committee in the early 70’s and right on through my years of practice as a special education attorney, I have been incredibly lucky in my work. There are not a lot of practice areas like special ed law where an attorney can wrestle with such interesting, worthwhile legal and substantive issues and know that the stakes are among the highest that can be imagined – the chance for a child who has intellectual, emotional or physical challenges to grow as far as she can toward her full potential.
We are entrusted by our clients with the future of their children; they let us into the most intimate recesses of their lives in order to carry out our work; and the trust is a sacred one. More, through our contacts with some of best of the professionals who evaluate and treat our clients, and through the research we must do to understand our clients’ needs, our work offers us the opportunity to learn about a vast array of critical factors that affect human learning and growth.
The work is highly stressful, given the stakes and the complexities, – you might have noticed! – and yet with healthy management of our stress we can become excellent helping hands to the clients we serve.
About that stress: If I may be indulged as an old warhorse now – and one, by the way, who would be with you in person were it not for having had my chest opened three weeks ago for a heart bypass [[I’m fine, by the way, and making an excellent recovery]] – I’d like to offer a few thoughts about how one might carry out the work of an advocate over the long haul, without burning out.
At this conference and through other means, I know you are all honing your advocacy skills and learning as much as you can about how to navigate special education’s crazy quilt of rules and substance. I want to address something a little different here – to describe a few basic elements of my own history that I think have enabled me to keep on keepin’ on for, now, more than 40 years in the work.
Never stop learning. Learn to listen. Protect your heart: cultivate calmness under stress. Be connected.
First, dig into every possible resource to keep educating yourself, and never stop learning. The disabilities that can undermine progress in school are widely various, and each one carries its own questions, history, and, typically, many competing schools of thought about how best to assist the child.
You are best armed – and most at ease in this work – if you are fully informed about the disabilities you encounter, the competing options for treating or addressing those disabilities, and the ways in which any particular disability has been viewed and treated by hearing officers and courts.
We’re strongest when we know what we’re dealing with …
Are there any shortcuts? Not really, but one that I always recommend and would make required reading if I could, no matter where you may be in your advocacy career, is the book, Far From the Tree, in which Andrew Solomon writes eloquently and deeply about a number of common and not so common challenges that people experience, separating them from their families or their wider communities.
Other examples of must reading: We all know of the huge increase in the numbers of children struggling with spectrum disorders and the battles over how effectively to meet those children’s needs. A book that I think is indispensable for understanding Autism is Donvan and Zucker’s In a Different Key.
And third on my list: Carson and Judith Graves’s book, Parents Have the Power – a cleanly written resource to help parents help themselves in the process – a way to make our own jobs easier. (Disclosure: the Graves’s book includes a foreword that I wrote for them, canvassing some of the history of advocacy and the current sharp challenges to the system of rights we work with.)
Second, a corollary: learn to truly listen without interjecting or being deafened by your assumptions – what you think you know. Listen deeply to both the verbal and the nonverbal communications of your clients, of your colleagues and of those on the other sides of the cases you handle. When we think we know it all, we sometimes miss that one singular fact or strategic opening that may turn a case in a new direction.
Third, you all have great hearts – you would not be in this business if you did not – so nurture and protect that heart! The two inevitable enemies of a healthy heart are uncontrollable stress and bad physical and nutritional habits. Take care of yourselves!
Know that one of the great heart-stressors in our work can be the attitudes and actions of hostile school personnel. How should we deal with them? We all encounter school people who act badly – with disdain, with implacable coldness and bureaucratic arrogance, even, sometimes, with flat-out bigotry toward persons with disabilities. But understand that if you react and are driven by rage, you hurt only yourself and your client.
We all have to figure out how to turn anger into compassion: otherwise we become our own enemy and, in many cases, our anger distracts us and blinds us to a raft of possible strategies that might actually help our clients. Try to avoid demonizing those who wish to thwart our mission: do everything you can to get behind the curtain and understand what drives the school folk that are blocking you.
They are, believe it or not, fully human, and somewhere in there you can almost always find an opening. At the very least this entails always – always! – treating school personnel with the utmost respect and kindness, even if – in fact even more so –they treat you and your clients with apparent malevolence. (This applies not only to our particular advocacy work, but is a caution for our whole political/cultural lives at least, it seems, for the next four years.)
As for the physical, please take care of that heart with exercise and mindful eating, and also cultivate an interest that has little or nothing to do with your special ed work, be it in music, drama, book clubs, yoga, whatever – feed the interests that give you joy outside of your work to sustain yourselves and the work that you do.
I know whereof I speak. My own attention to physical exercise, to music and to friends has literally saved my life and has made my ongoing recovery from open heart surgery a much easier road than it might have been. It’s never too late to start!
And, finally, please don’t work in isolation. Create, nurture and sustain a working cadre of fellow advocates and experts. This work is too demanding to carry it all on your own shoulders. Find and cultivate colleagues with whom you can toss around issues and strategies and provide mutual support.
And, more, with those colleagues, keep an eye always on political and legislative developments that might advance or undermine special education and disability rights, and be willing to make calls and write letters to legislators to let your voices be heard.
Thank you again for this award. It’s a good feeling to be recognized by my colleagues in the field for work that has so enriched my life and enabled me, with my colleagues at Kotin, Crabtree and Strong, to help children and families live better lives.