Testimonial: “Living with a Disability” by Marianne DiBlasi

Delivered on March 1, 2009 at First Parish Unitarian Universalist in Lexington

How do I share 50 years of what’s it like to live with a physical disability?  It would certainly take longer than the time we have this morning, so I’m going to zoom in and focus on one aspect of my life.  I’ll share what it’s like for me when I meet people for the first time, am part of a community, including some of the ways people ask me about my disability, and how they don’t ask. 

I’ll begin by describing what typically happens when I meet a child in a public place.  It could be at a Starbucks, in a restaurant, or at a store.  A child will be walking, talking, or playing and when they see me walking with my crutches – they stop dead in their tracks and stare at me.  In that moment, I am reminded of how “different” I am.  In that moment, what I feel inside of me is – “the child is staring at a Freak in the Freak Show at the circus, and I’m the freak.” 

Over the years, I’ve had many reactions to children staring at me.  Sometimes I just stare back at them – hard, until they get uncomfortable and look away.  Sometimes I smile really hard to try and convince them I’m not scary.  What I most often do now is… I smile softly, say Hi, and either continue on my way, OR if I have more time, I may ask if they’re looking at my crutches.  If the child talks to me, I’ll usually have a short conversation with them about my crutches and why I use them. 

Kids staring has been a difficult experience for me.  I know in my head that they’re only looking at something “different” – my crutches and the way I walk.  And yet, my heart still feels a stab of pain because I’m “different”, and what I’ve wanted more than anything most of my life is to be “normal” and fit in.  Through conversations with my therapist, I learned that feeling like a Freak is how I feel about myself, not necessarily how they see me.  And yet, it feels very real. 

What I’ve noticed is – the more I embrace my disability, the less like a freak I feel, and the more gentle I am with kids staring at me.  For me, embracing my disability is a spiritual journey, and where I currently am on that journey is…. accepting the simple truth that “people look at different”.  It’s human nature to be curious about differences.  Feeling like a Freak is very small – about the size of a peanut.  I feel it, but it’s a tiny little bump in the road.

The other experience I often have with kids is they ask, “What are those?” or “Why do you use those?” (referring to my crutches).  I usually tell them that I use crutches to help me walk because some of the muscles in my legs are weak.  That satisfies most of them, and only occasionally do I meet a chatty kid who has more questions.  Once again, I notice that the more I embrace my disability, the more I appreciate their open, direct curiosity.  I also feel a responsibility – to give them a positive experience of meeting and talking to somebody with a disability.  My hope is they’ll be more accepting and at ease with the next person they meet who has a disability.

With adults, I have a different experience.  Adults don’t generally stare or ask me “What are those?” When I’m in a public place like a store, a restaurant, or Starbucks – the question most adults ask is “What happened to you?”  I know people use that question as a conversation starter, and I think as an attempt to create a connection with me.  However, the question “What happened to you?” is so vague and all inclusive that what I feel inside of me is…  “There’s something wrong with the essence of who I am.  The essence of me is bad.”

That question “What happened to you?” puts the burden of responsibility onto me to figure out what they’re referring to AND to tell them a story about it.  I’m still searching for a response to this question that feels right to me.  My current favorite response is to ask the person to qualify what they’re referring to by being curious and asking them… “Are you referring to my crutches?”  This is my way of getting a taboo disability word out of the closet…. by asking them to acknowledge what they’re seeing and referring to.

I wonder what makes it so difficult to say the word crutches? Even if they said “I see you are walking with crutches, what happened?” It would feel much better because then I would be clear on what they’re seeing and asking about.

The other experience I have when meeting adults, especially when it’s in a place where I’ll see them again is… people take their time to get to know who I am as a person and they don’t generally ask me about my crutches right away.  This is wonderful because I AM a person first.  However, what I also notice is that no matter how long people know me, they generally don’t ever ask me about my crutches or Disability, unless I bring up the topic in some way. 

I wonder what makes talking about a Disability such a taboo topic?  I can share what’s difficult about it for me.  You see, I actually live on both sides of the fence – I’m a person with a disability AND I’m a person who talks to others who have a disability.  And just because I have a disability, it doesn’t mean I’m automatically comfortable talking to someone else about their disability.  I live within our societal norms too. 

What makes it challenging for me is…. I don’t want to make the other person feel bad or uncomfortable so I tell myself I’m being “polite” by not asking.  The truth is, it’s me who feels uncomfortable… because it’s never comfortable to ask about a Disability, it’s never the exact right time, there isn’t an exact right question, or an exact right way to ask it. 

The other thing that makes it feel uncomfortable is… there’s no way to know how the other person will respond – they may tell me it’s none of my business, they may be angry, look hurt or be embarrassed.  Maybe, they’ll go on and on telling me their life story.  Or perhaps… they’ll give a clear, direct answer.  There’s no way to know how they’ll respond.  So, asking a question means taking a risk of potentially making us both feel uncomfortable.  But if I never take a risk and wait until I’m sure that both of us will be comfortable, I’ll never ask.  And if I never ask, then I miss out on getting to know them more fully.  So, I risk feeling intrusive, impolite or being yelled at – and I ask.  I also trust the other person will decide if, and how much, they want to share.   

You’d think it would be easier for me to ask others about their disability because when people are curious and ask me questions about my disability, I like it.

I like when someone asks with open, direct curiosity…. “What’s your disability?” My typical response is…. “I was born with Spina Bifida, which is essentially a partial paralysis from the waist down.”  I am comfortable if they ask more questions like… “Do they know what causes Spina Bifida?”, “Is there a way to prevent it?” or “What was it like for you growing up with a disability?” or “What’s it like for you to move around crowded rooms (like social hour & potlucks) on crutches?”  These are wonderful questions of curiosity.  It’s human nature to be curious – that’s why kids are so good at it.  And it’s human nature to want to be seen, heard and understood by others – for All of who we are.

For me, when people ask questions about my disability, I generally feel that they are accepting and welcoming all of me, and wanting to get to know me.  Having a disability is a part of my life experience, it’s a part of who I am.  When people ask me questions, I get a chance to share that part of my life, and who I am, with them.

One final comment…. Now that I’ve spent all this time talking about how to ask about my disability – my disability is not all of who I am.  What’s also important to me is that people See me, Approach me and Talk with me about regular life stuff.  I appreciate when people see and talk to me as the Whole and Complete person that I am, who also happens to have body that moves different, and is shaped different, because I was born with a physical disability called Spina Bifida.

It is my dream that someday…. whether we are talking about Regular Life Stuff or about Disabilities, or any other “Difference” – we will be at ease talking about all of these topics with open, direct curiosity.  When that day comes, it will be a lived expression of valuing the human dignity and worth of every person.