All posts by Marianne

Testimonial “Living with a Disability”

Communications, Personal Reflections

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. 

Special Accommodations for Employees Results in Increased Productivity

Accessibility, Business, , ,

I recently watched a story that aired on the show, CBS Sunday Morning, about BMW in Germany and how they are looking ahead to accommodate the “special needs” of an aging workforce. BMW values their older workers because they have more patience and skills that comes with experience. What they have less of is flexibility, strength and keen eyesight. My ears perked up because I was hearing a similarity between aging workers and common challenges of individuals with disabilities.

BMW created a special project taskforce team of employees with an average of 47 to provide feedback on how BMW can make things better on their production floor.  The responses they received included; use of magnifying glasses, wooden floors, special shoes, computer screens with larger type, seats to sit on, and places to stretch on the work floor. In the end, they made approximately 70 small changes that cost about $50,000.

The surprising part of the project’s results was the impact on profitability. BMW experienced a 7% increase in productivity, a reduction in absenteeism, and a defect rate of zero. With these results, BMW is no longer calling this a project to aid the elderly.  They are calling it their fresh, new plan to increase productivity.

I am impressed with BMW’s willingness to face the reality of an aging workforce that is looming seven years down the road and to admit they didn’t have a solution. Kudos to BMW for seeing and naming the elephant in the room!

I am impressed with BMW’s process of being curious, engaging directly with the workers, and asking them to tell management how to make working conditions better. They went straight to the source!

I am impressed with the simplicity and practicality of these special accommodations.  It took so little for the company to improve the quality of life for their employees, and in turn, for the company to profit on multiple levels. Humanitarian and profitable!

I wonder how many companies avoid proactively hiring workers with disabilities because they don’t know what special accommodations they’ll need? When we don’t know, our imaginations often run wild and we think up all sorts of “what if” scenarios – most of them very expensive. Many times the needed accommodations are actually very simple and practical – if we are just willing to go directly to the source and ask “What do you need to make things better?” The solutions may be surprisingly simple and they may also be beneficial for other employees in the company. It could just be a simple and powerful way to increase employee morale, reduce absenteeism and increase productivity — the dream trifecta for every organization.

Your Child’s in Tears. What’s a Mom to do?

Parenting, Self-Care, , ,

 

It’s the start of the school year for moms and kids everywhere. Moms are back to focusing on helping their child have a positive school experience. For moms of a child with special needs, this is an especially stressful time of year—ensuring the team is in place to support your child with IEP’s, special education, transportation, school nurses, teachers etc.

After you’ve worn yourself out to get the school system in place, there will likely come a day when your child comes home in tears because they couldn’t run fast enough to keep up with the other kids at recess or someone called them “weirdo”. You’ve done everything humanly possible to help your child and still it’s not enough—because you can’t make the disability go away and you can’t control what others say or do. So, what do you do when your child is looking at you with tears rolling down their cheeks?

Speaking from the perspective of an adult who was once a child with a disability, Spina Bifida, I wanted my mom to hold me in her arms, listen to my stories and let me share all my feelings of sad, mad, scared and hurt. I wanted my mom to be with me so I wouldn’t be all alone. Like any kid, I wished my mom could just kiss it and make it better e.g. make the Spina Bifida go away. Other than keeping me home with her forever, my mom wasn’t able to keep me from being hurt sometimes. What she could give me was a safe place where all of me was accepted and loved—in her arms where all my big, messy feelings are welcome.

To moms (and dads), holding your child when they’re crying may seem simple enough to do, yet in reality, there is nothing more challenging than holding your child while your heart breaks for their pain, you’re furious at the world for hurting your child, and feeling helpless to make it better. This is especially true when you’re exhausted from working so hard, every single day, to make your child’s life the best it can be and you’re feeling sad, mad, scared and frustrated yourself.

My invitation for parents is to be real with your child and let them know that you share their pain. Acknowledge and validate your child’s feelings, let your child know that it does stink and you hate it too. You both share the experience of disability—each from your own perspective—why not share feelings too? You don’t need to be stoic and heroic pillars of strength for your child.

When a parent validates their child’s experience, this lets your child know “It’s OK to be as you are. I am here.” By doing so, you give your child permission to be more fully themselves, allowing their emotions to flow through them more freely without pushing them away. This builds emotional capacity in your child and develops their resiliency at handling the frustrations and challenges of life, including living with a disability.

In both my personal and professional experience, I have learned that the ability to be emotionally present with another, especially a precious loved one, requires that you are first able to be present with your own feelings. And feelings related to disability are typically very big feelings. I encourage parents to get support for themselves—where all of you is accepted and loved. A safe person who will listen to your stories and welcome all your big, messy feelings.  This builds your emotional capacity and develops your resiliency to be with your child — whatever they are experiencing or feeling.

If you’d like to read more about sharing the grief and feelings with your child, one of my favorite articles on this topic is “When Facing Disabilities, it’s OK to explore the grief” by Barbara Meltz, which ran in the Boston Globe on April 7, 2005.

My Maiden Wheelchair Adventure

Accessibility, Personal Reflections, , , ,

Monday July 26th was the 20th Anniversary of the ADA and Boston was having a celebration on the Common. I did not participate in any events to honor the signing of the ADA in 1990. This created a stronger desire in me to celebrate the anniversary of this civil rights event that has created freedom and supported the rights of people with disabilities.

I decided to travel into town on the MBTA in my newly purchased wheelchair — my maiden voyage! What a perfect day to do it. My friend Jean and her son joined me. I was very grateful for their wonderful company and for their help if I ran into any unexpected mobility situations.

We got on the T at Wellington Station and my first moment of hesitation was crossing from the platform into the T car – there was a gap of 3 inches, just enough for the small front tire of my chair to fall into and get stuck. I took a deep breath and went fast over the gap, and I made it into the car. Whew!

A friendly MBTA worker was on our car and chatted with us on the ride into Boston. We told her why we were going into Boston. She eagerly told us about many MBTA accessibility services, including a ramp to help wheelchair users get to and from the platform and car. She obviously cared about providing service to T passengers, so I wondered why I had not been offered the ramp when she saw me on the platform.

I decided to ask. Her response surprised me. She told me that she used to be much more proactive about help to people with disabilities, but she got so many dirty looks, was yelled at and received other rude responses that she has become much more hesitant about offering assistance. Who can blame her?

I also get why I and other people with disabilities get angry. We are often invisible and not included in mainstream society and employment, yet we are very visible when it comes to asking us if we need help. We are typically bombarded with offers for assistance. But we are competent, capable individuals who know how to get around and do most things independently.

Personally, I’m angry that my disability makes it hard to do some things. I don’t like that I’m dependent on receiving assistance from others when I’d rather be able to do it myself. Independence and freedom are often hard won battles for people with disabilities. Who can blame us when we get angry because we’re offered assistance for the umpteenth time?

Whether disabled or not, we all are living our lives with the best of intentions, hopes and challenges of daily living. How can we be more fully seen, heard and understood for our true selves? We can start with curiosity and being willing to open our eyes and ears to understand what the other is experiencing and feeling. We can also dare to be real and share more openly about what we’re really experiencing and feeling. In this way, we are able to be more fully true to ourselves and in more real relationship with others.

Greater Mobility with a Disability

Accessibility, Personal Reflections, , ,

After 51 years of walking with crutches because of my disability, Spina Bifida, I decided to order a wheelchair. My ability to walk has not changed, which has made family, friends and colleagues curious about my decision. I’m sure they’re thinking, who’d choose to be in a wheelchair when they don’t have to be? At least that’s how I’ve always felt. I thought of a wheelchair as the “dreaded thing” I’d be stuck in when my health declined and I could no longer walk. I’d be more limited and restricted than I already am walking with crutches. So what changed for me to order a wheelchair?

Most significantly, it was a steady and persistent focus on shifting my relationship with my disability from “my body has betrayed me” to acceptance of my body as it is. This shift allowed me to open my eyes and my heart to seeing others in the Spina Bifida community in a new way. I saw those in wheelchairs going from place to place faster and further than I could walk on crutches. Their world seemed bigger and freer to me, not more limited, as I had always imagined.

With this new perspective, I purchased a wheelchair so I too can go faster and further than I can walk with crutches. What freedom! A whole new world has opened up for me. I am able to go for “strolls” on the local bike path, walk the entire Mall, travel by MBTA into Boston, and explore the main streets and back roads of cities and towns! Using my wheelchair is a joy.

Some may say it’s easy for me to feel joyful about my wheelchair because I’m able to walk with crutches.  I only use my wheelchair when I choose to, not because I have to. This is true and I’m aware of how “needing” to use a wheelchair can make a big difference in how joyful it feels.  Since I’ve “needed” to use crutches my whole life, I reflected on… What is my relationship with my crutches?

As with any relationship, it’s complex and has many dimensions. When I was real little, they were just another part of me — no big deal. When I was seven years old, my family moved from Medford to Winchester. Being the new kid in school is when I saw my crutches through the eyes of the other kids as something that made me different — and not in a good way. My crutches were also the reason why I couldn’t walk fast enough or far enough to keep up with everyone else.

My crutches were blamed as the reason I couldn’t play like all the other kids at recess. The reason why kids in High School didn’t ask me to go with them downtown or to the Mall.  I was convinced that my crutches and disability were the source of all my problems and the reason why I was not included.

As a teen and young adult, I stubbornly used wooden crutches, even though aluminum crutches became available. In my mind, wooden crutches were used more often by people who broke their legs and only needed to use them temporarily. And I wanted people to think my crutches — and disability — were temporary, not permanent. Eventually, I did begin using aluminum crutches, which were much lighter, except they squeaked and rattled — which I hated.

My big crutch breakthrough came when I made the decision to buy a pair of “permanent” titanium custom designed crutches. They’re gray, sleek and awesome! When I bought these obviously “permanent” crutches, something shifted inside of me. I reclaimed the part of myself that needs crutches to walk because I’m disabled.  My crutches became just another part of me again. I still had a long journey to go with accepting all the other aspects of living with a disability, but I was ready to admit to the world that I used permanent crutches because I had a permanent disability.

I can best describe my current relationship with my crutches as — I have great respect and appreciation for them. They enable me to leave the house and walk out into the world — literally. And if I want to go faster or further than I can walk on crutches, I now have my wheelchair.