The news is focused on controversy about DEI: Diversity, Equality, Inclusion.
What’s wrong with the Medical Model?
What’s wrong with the Charity Model?
What’s the big deal about “normalization” and “inclusion”?
Why is “special” not special?
For those of us who care about people with disabilities and people on the fringe of society, the conversations are stressful–the whole paradigm shift “thingy”. Most people don’t want to take the time to understand or learn a whole new way of looking at the world. They think their view of the world is just fine, thank you very much.
As parents, we have been learning about differences for 30-40 years, our child’s entire lifetime. Our child demands we still learn every day.
For the next couple of days, I’m going share some of the people who shaped my beliefs.
I hope they can deliver the message of “normalization” far better than I ever could.
Norm Kunc changes lives.
I would spend the whole year teaching university students and teachers about the need for inclusion, normalization, self-advocacy, and people first… and they would nod their heads (or scratch their heads at the crazy lady), pass their tests, and go on with the way they always did things.
Norm Kunc came to campus, spoke to these same students, and in fifteen minutes–he rocked their world.
That quick–his message is that powerful.
Here is Norm’s Credo of Support. It is not the same as hearing him in person, but the video message shows the power of words and the talents of self-advocates. When Norm introduces the video he says the words just poured out of his heart.
In the post: Caring Community| People First Language we talked about the power of labels, negative stereotypes and the paradigm shift of looking at all people as PEOPLE First!
Today, on Valentine’s Day, I am asking you to think about how you use words:
Do my words cause Heartaches?
Do my words cause Heartsongs?
What are you doing?
WHAT are you doing?
What ARE you doing?
What are YOU doing?
WHAT THE HELL ARE YOU DOING!!!!
The same words can be said in anger or with gentle concern.
The speaker, the listener, the context of the communication, as well as the intent all, make a difference.
Parents, Teachers, Coworkers, Friends, Enemies… We have all been misunderstood and misinterpreted. We have all wished we could swallow what came out of our mouths–take back our words. We have all been both aggressors and victims and have given heartaches as well as heartsongs.
HEARTACHES: “What’s that mess on your shirt?”
HEARTSONGS: “I see you have paint on your shirt.”
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HEARTACHES: “NO!”
HEARTSONGS: “Let’s talk about this before you decide.”
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HEARTACHES: “Get over here right now!”
HEARTSONGS: “I need you with me.”
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HEARTACHES: “I told you so.”
HEARTSONGS: “That was harder than you thought.”
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In the comment section, let’s share some ideas on how you could make each of the following examples into either a heartache, or a heartsong?
Scenarios: Heartaches or Heartsongs.
1. Sara is eating breakfast. The bus is coming in 5 minutes. She spills her juice while reaching for the cereal.
What could you say that would cause a heartache?
What could you say that would cause a heartsong?
2. Ken wants to help his friend wash the car. He accidentally squirts him with the hose.
What could you say that could cause a heartache?
What could you say that could cause a heartsong?
3. Emily comes home from work. When asked about her day, she begins to cry and says, “Jim doesn’t like me.”
What could you say that could cause a heartache?
What could you say that could cause a heartsong?
By speaking with your heart, you may be able to bring out the very best in people. Give them a chance to talk. Listen patiently.
And of course, there is always the quote: “I know that you believe you understand what you think I said, but I’m not sure you realize that what you heard is not what I meant.” But we’ll save that for another post.
I’m wishing you a day filled with heartsongs. May you have many opportunities to give them and to receive them. Spread the love.
Keep Climbing: Onward and Upward
All my love,
Mary
Comments:
Do you have any examples of heartaches, heartsongs?
Heartaches turned into heartsongs?
Use the examples above, or share some from your own experiences.
Balancing my life vs. my child’s: Until my dying breath…
This is going to be a tough post. I might chicken out and not even publish it. I don’t want it to be a pity party: “You parents go through so much. You are Saints.” God Forbid!
See Aaron playing the key?
I am hoping this message will give other families a chance to take a breath and allow themselves a little slack. For those of you who are professionals, I hope it gives some insight into the choices families make–usually at a cost.
Families make hard choices all the time
All parents of young children, and adults who are caring for their elderly parents experience these same dilemmas. The sandwich generation is a well known problem in our culture and effects most families.
What is different for parents whose children are adults with disabilities? This intense care is usually not discussed or understood. It is not a time-limited situation where your child grows up or your parent dies.
Aaron is 39 years old and as I get older this is a growing issue. We are talking about–well, until my dying breath.
First Sign of Growing Old
I’ve been having lumbar back pain and had to begin a series of injections and other stuff. This is the first major medical issue I’ve ever had, so I have no right to complain. Plus my philosophy is that anytime a Doctor can actually “fix” a situation, I consider it a temporary problem and a medical victory.
BUT the bottom line was that for the first time ever I had to cancel Aaron’s doctor appointment.
I consciously chose my needs over my child’s.
I’ve had pain before, sure. But that has never stopped me, so why was this time different?
What was I thinking?
* There was the 50 mile round-trip drive to Aaron’s Doctor, the only one I trust who takes a medical card…
* Aaron goes every three months and didn’t have any major issues…
* We bring Aaron home with us every Saturday night. Whenever we take Aaron to the Doctor, we keep him both Saturday and Sunday nights and try to schedule on Monday morning…
* Monday mornings are the busiest day for the Doctor so there is always a long wait in a room full of sick people… Aaron is not a good “waiter”…
* I feel bad about the last minute cancellation to Aaron’s doctor, we try to be respectful of his time. If we have to pay the $30. charge, so be it.
* I always bring flowers to the receptionist in the Doctor’s office. She takes a special interest in Aaron and always gives him hugs and makes him smile. (I know, I know, amazing that I would spend energy on flowers for the receptionist–but she is one of the few people who get excited to see Aaron so that makes me happy too)…
* Going to the doctor takes a full morning…
* After the doctor visit we take Aaron out to lunch and then drop him off at his day program….
* Monday is the “community outing” day at the day program–so when they actually do what they say they are going to do (we won’t go there)…that means the group may or may not be in the building when we want to drop Aaron off…
* If the day program group is not there then we have to leave Aaron with the director who just puts Aaron with a book in a separate room and ignores him, a safety worry…
* The day program has Aaron’s noon medication, so the good thing is he will get his noon meds on time…
* The bad thing is I will have to be face-to-face with the director, who is a good person just has no resources. This means I will ask, “How is Aaron doing?” and the director will tell me they strongly think Aaron should be in diapers and have his meds increased… which will lead to… (let’s just say) be stressful for both of us and reinforce my reputation as “EVIL Parent and Day Program Public Enemy Number 1″….
I wrote this all out in stream of consciousness because this site is about climbing every mountain and mountains always have streams– did you like that analogy? 🙂 But, like most people, I think our conscious run streams of pros and cons with every decision we make.
Second and Third Thoughts:
I accept it, but I am not proud I made the decision to think of myself first. When we took Aaron back to his house on Sunday night and I was hardly able to walk on Monday morning I knew I did the right thing. There is no way I would have been physically able to give Aaron his bath, breakfast, and go through all the steps outlined above.
So Aaron will live, I’ll get better. But how soon will it be that either myself or my husband will have some serious condition where we require medical care and can’t take care of Aaron?
I look at Aaron’s housemate’s parents. They are in their 90s. They have done an admirable job, but age has now made them just as vulnerable as their son. Soon it will be my turn.
Damn! Why is this so hard? Why do I feel Aaron’s quality of life is ONLY in the hands of his family?
We are fortunate to have some good professional people in Aaron’s life. But why do the thousands of dollars being given to the agencies–who are supposed to be providing Aaron care–don’t care?
There is a huge difference between providing “care” and “caring”.
Comments
Okay, getting old is tough for everyone, share what you are thinking. Do you think it is more intense for a family with a child with a disability? Is it harder as the child grows into an adult?
Keep Climbing: Onward and Upward
All my best,
Mary
What I love about this video is musicians from all over the world are playing the same song. Giving the same message. Gritty to sophisticated, washboards to violins–it’s the same song and message.
Kind of like all the people who believe in inclusion are playing the same song and giving the same message.
Kind of like all the people around the world who are working to make the world an inclusive place for ALL people, including people with disabilities.
The Inclusion Network
Check out The Inclusion Network hosted by Jack Pearpoint. There are many friends there from TASH, Arc, and advocacy days gone by who have stood by me and other parents of people with severe disabilities. Just a few are John O’Brien, Connie Lyle O’Brien, Barb McKenzie, John McKnight… and Gail Jacobs.
Standing with One Person–and Many
Our 45-year journey toward Inclusion has been long and hard. And when we look at Aaron’s current life, we don’t seem to have made much progress. We’ve done three MAPS and person-centered plans but they just ended up in Aaron’s chart with a bureaucratic check-mark that they were completed.
We continue to do all the right planning, we take the right risks, we fight like the devil to get good programs, we attend countless meetings, join the right groups, and work with strong visionaries to build a better world for all people with severe disabilities. But it’s not enough.
The journey continues with every breath we have in this life but unless Aaron dies before we do, we need to plan for an extended journey that continues indefinitely after we are gone. We make our choices and face our battles: the big ones, and the little ones… we accept the compromises we have to make to survive. We keep believing. There is no other choice.
We stand on the shoulders of the parents, self-advocates, caregivers, teachers, and advocates who came before us and bought our opportunities with their sweat and blood. We continue their work. We attempt to build an inclusive community that has never existed in the history of the world…and then we will pass on this legacy to the next generation.
When all is said and done, we can hold our heads high and shout to the world, “We stood together for Inclusion.”
Our family stands for Aaron in our community. Across the world others, in their own way, in their own community, with their own child, or friend, are also standing for Inclusion.
And each day, we touch the life of one person–and many. We make things a little better than they would have been without our work for our one person–and many. And that gives us hope and is our life work.
So thank you, dear friends. Thank you, also, to all the people who are reading this who I have never met but who are working for an inclusive world where everyone belongs.
Thank you for standing by me. Thank you for standing by Aaron. Thank you for standing by all of us. God Bless.
