The Vision of Inclusion

Welcome to my second interview.  Dan Habib is a photojournalist who has produced a documentary film, Including Samuel, which portrays the Habib family’s efforts to include their son, Samuel, in all aspects of their lives.  Samuel has cerebral palsy.

Mr. Habib speaks candidly and openly about what it’s like for him and his family to parent a child with a disability.  I am pleased Mr. Habib agreed to talk to me around the theme of overcoming personal adversity.

How do you overcome and carry on?

I don’t think overcoming is the word I would use because I don’t think you have to overcome in order to live with it or manage it or put it in a more positive context than just dealing with the negative.   Sam has brought so many positive things to our life.  I think it’s made me a better person-  a better parent, a better husband, a better friend.  It’s made me look at the world through an extremely different lens that has allowed me to see diversity in a whole new light; to see human rights in a completely different light.  It has made me appreciate the value that each person brings to our society, regardless of their ability, economic condition or social status.  I knew a lot of this before.  My parents were civil rights activists and I was brought up with that in mind.  But there’s a difference between knowing it intellectually and experiencing it.

So for me, it’s not about overcoming.  It’s about how you take something that is an enormous challenge and integrate it into your life so that you can continue to live a full, exciting and wonderful life, in addition to the challenges.

What are some of the challenges?

Having a child with a disability is very challenging, there’s no doubt about it.  It’s challenging emotionally when you first learn about it and it completely turns your world upside down.  It challenges your sense of what you thought the future would look like in a typical way for a typical family.  It challenges your ability to cope with less sleep.

For us the biggest point of adversity has probably been the fear; coping with the fear of Samuel’s health.  The fact that he does have an underlying health condition.  I joke – if it was just cerebral palsy,that would be easy.  But he has an underlying mitochondrial disorder which makes his health much more fragile.  So when he gets sick, he gets really sick.  When he gets a stomach bug, he usually ends up in the hospital.  When he gets the flu, it can be life-threatening.  So there’s a lot more to it than just a physical disability.

Someone will ask me how is Samuel doing.  And I say there are two answers to that question.  The first answer is, he’s doing theatre, he’s starring in Fiddler on the Roof, he’s playing baseball, he’s following the Red Sox, he’s got lots of friends over, he’s started karate, he’s doing skiing.  All true.

The other answer is, he’s having these uncontrollable movements, he’s on 15 different kinds of medicines, he’s fatigued easily.  We’re also waiting on some blood work that may give us new information on his disorder.  You have to take both those answers.

It seems like you’ve created a lot of good as an outgrowth of the negative.  Can you speak to that?

I think we have.  I think the first thing is to realize that the negative is not as negative as you think.  And that’s really about creating a vision for your child and your family.  A very strong vision.  Our vision came out of our Leadership Series at the University of New Hampshire, where we had incredible role models from all over the country showing us what’s possible: that Samuel can have an incredibly full and happy life;  he can have rich relationships;  he can go to college and have a great profession.  That’s all possible.  I think when you establish that vision, suddenly the negative doesn’t feel like such a devastating blow.  That’s critical to have that vision.  That gives you energy to do some things you wouldn’t feel the energy to do otherwise.

For me that leadership series I took through the Institute on Disability,  which is where I work now, gave me the vision for the film; for taking my background as a documentarian and finding a way to tell a story of what it’s like to be a parent of a child with a disability, and use that experience to hopefully benefit other people; and change our school system and community.   

How do you continue to maintain a strong and positive demeanor?

It is truly from Samuel.  Samuel is a kid that has been through more medically than I’ve ever gone through in my whole life.  He’s had more blood work, CAT scans, MRI’s, serious illnesses, than most of us have in a lifetime.  And still he wakes up everyday with a smile and an optimistic outlook on the world, and kindness and compassion and a great sense of humor.  That has just given me such incredible strength.  He is definitely a role model for me.  And he’s definitely one of the strongest people I’ve ever met in my life.  Obviously I don’t mean that in a physical sense, but in strength of character and emotion and persistence.  His persistence is incredible.

Staying strong as a family unit,and specifically as a couple, has been important.  We work hard to even things out, to create more of a balance in how we share the many responsibilities of Samuel’s health and educational concerns.

I respond by channeling a lot of my energies into my work.  It’s been healthy for me but also tricky.  At first when I was working on Including Samuel, I almost used the film as a place to get lost, away from the daily stresses and realities and fears.  My wife called it planet Dan.  There were times when I was making the film, that my head was so into the film, that I wasn’t as connected to our family and to her as I should’ve been.

Was there a specific moment, thought or epiphany that helped guide you to a better place mentally/psychologically?

We didn’t realize he had a disability at birth.  It was a gradual process.  He was not hitting the developmental milestones.  It unfolded over a period of time.  But there was one moment I think that was the lowest point in my life, when one of his neurologists called, who we no longer work with  for self-evident reasons, who said, ‘I think he has mitochondrial disorder’. We didn’t know what that meant so we did what parents do now – went on google.  It said, ‘usually fatal’.  And that was when I felt-  anything short of this I can handle.  Once you or a loved one has had a near- death experience, or in this case, a near-death diagnosis, it changes your perspective on everything.  Getting Samuel up and changed and dressed and ready, doesn’t seem so bad when you think, I’m happy for this moment, this day.

What qualities within you helps you carry on?

I am a very optimistic person by nature.  That helps.  It’s good to be optimistic, but you can’t let that create denial of some of the challenging realities. The problem is if you’re only optimistic and can’t acknowledge some of the fears or difficulties, your partner feels very alone, and so do the other kids.  We realized that in terms of Isaiah.  If we weren’t honest with him about our fears and stresses, he would’ve picked those up.  Kids have incredible radar.  And he might then feel all alone in feeling those fears.

There’s another big component and that is my own foundation; my foundation of what I was given as a child through my family.  I had a very stable, loving and supportive family life.  I had that love and support where I felt good about myself.  I think that gives you energy; when you’ve been nurtured. And that gives you a positive outlook on life.  You have to tap into that everyday to manage these challenges.

Sometimes I feel that everything in my life kind of prepared me for this moment.  Some of it is resources I was given by other people – by Betsy (my wife), by my parents and  by the experience of raising Isaiah for 3 years before having Samuel.

What keeps you going?

We learned to ask for help.  And we learned to accept help.  We realized we needed it.  Samuel needs 100% attention most of the time.  He needs someone a few steps away.

Betsy and I make sure we carve out time for ourselves.  We’ve made it a priority to take care of our relationship.  And also to make sure we have lots of time with Isaiah and with the family as a whole.

We have a very strong local community in Concord, New Hampshire.  We are amazed at the openness and support we have received for including Samuel in school and recreational activities.  That’s why it makes me sad, and at times horrified, to hear about the obstacles some families face to include their child with disabilities in the most simple, basic ways.  So much of what could be draining for people when you have to fight those fights everyday, is not draining for us.  That’s a huge factor.  It’s so critical.

What pearls of advice do you have?

The vision – it helps sustain you.  And don’t compromise because of the disability.

Communication –make time to speak openly and honestly.  Try not to let that (challenge)  always dominate the conversations.

Ask for help – learn to be comfortable asking.  There are people who want to be there for you. You can’t sit back and hope people respond.  Let people know how they can be helpful.

I hope this is the greatest challenge we ever face.  I hope I’ve already faced the hardest part of it.  In some ways my life is richer and happier than it would’ve been otherwise.  I appreciate every moment.

Visit “Including Samuel” at www.includingsamuel.com

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