A Reflection on Gratitude and Hope – Joan Johnson

I have immeasurable gratitude for my chance to witness the pursuit of “the beautiful ordinary!”

WOW! Over forty years raced by in the speed of light-don’t blink! In a very few weeks, I will “retreat” to my ancestral home of Browns Summit for this phase of life, some call retirement. I call it re-purposing and finding new passions while not leaving behind old ones!  Whatever label is put on this phase of life is really of little consequence when I know that I can never leave behind the passion of advocacy and action for people with intellectual and developmental disabilities (ID/DD) and their families.  In this season of giving thanks, along with this watershed moment in my life, I really look back in absolute awe and immeasurable gratitude for having been fortunate enough to be a direct support and systems change ally for people with ID/DD.  And, I have been further blessed in the “winter” of my career to be a part of the UNCG Team, Beyond Academics, that has in the last ten years planned, developed and implemented a unique and effective college certificate program for students with ID/DD, the very first such university program in North Carolina and the largest, now serving over 60 students per year.

Just 12 years ago here in the Triad area, students with ID/DD and their families along with professionals with ID/DD identified post-secondary education experiences as a needed vehicle for assuring that there was a “real chance for a real life”, which would include jobs, supported and independent living and engaged citizenship in the community in which the person lives. Hope seemed to be fading that those outcomes could be reached. Statistical evidence for these outcomes was not very promising. Community activists would not hear it!  Synergy and perseverance among these committed advocates were the catalysts for a movement. In my career lifetime this tide of support for higher education access was among the most incredible quests I have ever witnessed for equality and inclusion- in short, one of the last frontiers of civil rights being taken on and addressed through advocacy instead of litigation!  The initial  doubt of the concept, and later as Beyond Academics became an operational reality underscored by a dearth of research literature, would linger and leave others wondering if “this” was the right approach for people with ID/DD…it was and is imperfect…there is still a lot of learning and development for the foreseeable future, but COLLEGE access is here, alive and well, not only at UNCG and through other higher education institutions in NC, but throughout the nation in over 260 programs.  NOW THAT is a movement –  It really does take a team of eager racehorses to push forward that kind of development, which especially includes those persons for whom the access means so much who also inspire that level of “get it done”!

Beyond Academics today has to be viewed in the context of “yesterday” and what you will see is an extraordinary pathway that has opened new opportunities and promise for a “real” life for persons with ID/DD.  In the last few months and reflecting on the many, many experiences that have filled more than 40 years of my time, today we are light years away from the 70’s education and service systems.  I started my career as an assistant teacher in a developmental day care center, a place where children and adolescents with ID/DD could get some modicum of education and service support, because they had NO access to free and appropriate education…school was not viewed as necessary or essential. Institutional placement in large congregate facilities was a routine recommendation for people with ID/DD. Group Homes, sheltered workshops, day activity programs, some periodic in home support services were beginning to emerge in the communities as an alternative to institutionalization…we thought we had arrived at the pinnacle of services and support to people with ID/DD.  Little did our learning community know that there were miles to roll in facilitating support toward inclusion, not merely integration in our nation’s neighborhoods, towns, and cities.

What a privilege to have observed and played a part in the community system of support.  Here is a list of what I have witnessed that seems typical now, but was anything but typical in those early days:

  • babies and pre-school children with ID/DD getting early intervention and a leg up on their development,
  • children and young people with ID/DD attending school and graduating with their peers,
  • persons with ID/DD accessing living environments that any citizen pursues,
  • people with ID/DD engaging in competitive, not segregated, but ordinary jobs that they decide to pursue,
  • people with ID/DD giving back to their communities, instead of always being in a recipient role,
  • people with ID/DD deciding on their friendships and relationships,
  • people with ID/DD exercising their civic duty of voting,
  • people with ID/DD being contributing citizens to the communities in which they live
  • and NOW, we can add higher education opportunity to the list

These are the roles, desires and aspirations that any of us have in living out OUR lives…it should be no less for any person regardless of some label that is affixed.

Recently the National Institute of Post-Secondary Education bestowed a Leadership Award for Beyond Academic’s innovative work in developing opportunities for higher education access for students with ID/DD.  The truth is the accolades belong to the students and their supportive families in trailblazing the opportunity.  I am confident our Beyond Academics Team at UNCG would echo that sentiment!

As I prepare to take my leave, I will do my part to continue being a voice out there for even greater developments in higher education and truly inclusive communities for persons with ID/DD. The beauty is that I will be “singing with the choir” in this state and beyond.  I am excited to see the generation of leadership emerging among students, families, professionals in the field, faculty and other community partners in taking this forward.  If I had one wish that could be granted, especially when I am relegated to my rocking chair (by the way, which I don’t plan on for another 20 or so years), it would be this:  Can we move beyond the “special” in education and supports where we no longer have to categorize what we do for people to optimize their learning potential and ultimately, outcomes? We would commit to engaging learning in a way that values and embraces the rich diversity of people, period.  THEN, we would have truly arrived at inclusion and what I call, “the beautiful ordinary”!  What a day that will be and I will be thankful to be a witness to that!

  1. Ginger Walton

    November 21, 2016 - 2:34 pm

    We look forward to see what the next chapter of your life brings, both to you and to those for whom you advocate. Thank you for all you have done to date. You are an amazing advocate!

    • Joan

      November 22, 2016 - 8:09 am

      Thanks so much, Ginger- so many passionate advocates out there – I’m honored to be among them and add “voice” to the choir!

  2. Ollie Williams

    July 18, 2017 - 11:55 am

    I would love know, how I can advocate for other. I have to adult children that suffer from mental illness, I myself have struggled for years with anxieties, depression and schzo-effective disorders.

    • Lindsey Brake

      July 21, 2017 - 1:01 pm

      Ollie, InFocus would love for you to provide submissions through the 1photo InFocus link on our website. This provides an opportunity for people to share their voices with the world through one photo and a short quote. Please check it out!

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