Earlier last month, June 8th, I attended the NC Behavioral Health and I/DD System Leadership Congress at UNC Chapel Hill with the Jordan Institute for Families and spoke as a consumer parent.
This leadership "summit" as I like to think of it, was an brilliant idea and effort to bring together all the powers that be in North Carolina's Mental Health, Developmental Disabilities, and Substance Abuse Services systems for a day of laying aside our egos and finding common ground. Among the rules: "No shame, No blame, and No enemies"...
It is my understanding that the late Steve Jordan, Director of North Carolina's Division of Health and Human Services, was instrumental in manifesting this vision.
Below are my speaking notes from that day...
I'm proud to say there were many tears as I walked away from the microphone, followed by numerous hugs. --Those tears gave me hope... It is our humanity that connects us and without that, we are all lost.
Speaking Notes
When I was invited to participate in this “summit” – a gathering of intelligent minds and caring souls for an active listening dialogue toward a common good, I thought, “What a novel idea!” and so wore today the closest thing I own to bellbottoms! So please pardon my casual appearance; it is my day off. –I understand we’ll be roasting marshmallows afterwards.
Rather than tell MY story, I’m going to do something a bit different.
I’m going to tell A story…
Could our video guys please dim the lights a little; as low as you can still record?
Thank you.
Most of you raised your hands at the beginning when asked if you knew someone or had someone in your family affected by mental health issues. Most of you are probably parents as well.
Think of these people now: those you know and your own children…
Let’s take just a moment here to STOP…
I’d like for you each to close your eyes… take a deep breath and imagine, just for a brief instance, that you are not a State Director nor Department Representative, not a Policy-maker nor LME, nor Provider; you’re not an elected official, not a politician, nor even a party affiliate – it’s not that you don’t care what’s going on in the world around you, but your world demands all of your time and energy...
You are only an expert in what you know: your life, your family, your children.
Imagine that you’re just an average North Carolinian living paycheck to paycheck trying to be the absolute best parent you can be providing for a child you never anticipated; a child you would give your life for just to hear them speak the words, “I love you.”
You juggle all your time between coordinating and attending appointments with doctors and specialists and therapists, attending IEP, ESY and CNR meetings and a whole host of other acronyms, working to provide for your family, feeling guilty over the lack of “normalcy” and opportunity left over for siblings, researching special education law and medical issues, catching up on missed work, catching up on missed life, neglecting your own needs, networking with other parents searching for answers and sharing resources, learning sign language, physically caring for your special child, giving injections, changing g-tubes and adult diapers, and fighting for their rights – against the school, against the county, against a library that discriminated against your child, against the State who threatens not just their livelihood and quality of existence… but the very ability to LIVE.
You pray, you cry, you curse, you question… and you pray and cry some more.
You stopped thinking long ago about providing a better life for him or her than you once had; you only want what’s right and just and to not have to wake every single morning wondering that which haunts you to your core, “What would happen to my child if something happened to me?”... Just for a second, please imagine, please consider, what if this were your child?
And this is only a tiny intimate glimpse into one perspective among many, many distinctly unique personal challenges and needs. There are countless more individual lives with different experiences, different abilities and different needs – as different as our own fingerprints.
I maintain – the Human Element is missing. In the shared passion and determination to make a difference, we have lost sight of our reason for being here. THAT is our disconnect. And the human element is what connects us ALL.
We are NOT afraid of change. Our lives ARE change.
What we’re afraid of is FAILURE:
- Of failing the potential and purpose of each and every individual, regardless of need or ability.
- Of failing Ourselves.
- Of failing the children who emanate love and spirit unconditionally and at the end of the day, keep it real.
- Of failing those we love and care far:
- Who are fragile,
- Who are in need,
- Who are struggling to maintain,
- Who desperately DESIRE to BE,
- Who are INTENDED to BE.
We are ALL INTENDED to BE.
Everyone has something to teach… My daughter Isabel is my greatest teacher.
What can we learn from one another?
We are ALL EXPERTS in OUR OWN LIVES and it IS PERSONAL.
And NONE of us can afford NOT to get this right on this level of magnitude…
How do we fix it?
Thank you.
Crystal J. De la Cruz - Hopper
Special Mom, DD Advocate, & Concerned NC Citizen
June 8, 2012 Leadership Congress
