Redefining Disability Challenge – Question 8

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the eighth question in the Challenge. I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later.

Here is this week’s question:

Is your family life affected by disability? In what ways?

I was born with my disability, so of course it has impacted my entire family. When I first thought about answering this question, I wondered what my family members would say. What is their impression of how our family life is affected by my disability? What have they learned? How have they changed over time?

I come from a large Italian-American family, a cultural background where family is more than parents and siblings. Cousins, aunts, uncles, nieces and nephews – we’re all family. I also believe friends are family you make for yourself. I am not the only member of my family (birth family or created family) who lives with disability. Down Syndrome, epilepsy, diabetes, lupus, depression, and other mental and physical disabilities – they are all present.

If you are a regular reader of this blog, you know I have five older sisters, four of whom are still living. For this week’s challenge, I asked each of them to write a paragraph or two about having a sister with a disability, and how it has influenced their view of the world. Here is what they had to say. I kept their words, even though some of them cause me to blush, but I did edit for space and clarity, and to reduce repetitions.

From Caroline:

Since I am closest to you in age I was very aware from the beginning of your need for modifications. Your frequent falls and stumbles bothered Mom terribly. She always felt so bad to see you struggle. Mom and Dad made every attempt to help you in any way they could.  They made plans to install the ramp on the back of the house because they knew you would need it eventually. They encouraged you to participate in everything.

You really began opening our eyes to the need to boycott restaurants or events that weren’t “user friendly” or accessible. Through you, we all became more aware of the needs of several types of disabilities, not just wheelchair users. When we built our house in 2008, we made sure there was a ramp out front for access, 36-inch wide doorways, as well as raised toilets and bars in the showers.  Like you have always said, someday we might need the modifications ourselves.

From Susan:

I was in college when you were born and got married the following year, before you turned one, so I never had the pleasure of spending time with you as a child as a sister would. When Mom and Dad received your diagnosis, I was beginning a family of my own and felt somewhat detached from all that was happening with you. I spent a few weeks living at Mom and Dad’s right before my son was born and then I started to get a glimpse of the reality of what life might be like for the three of you.

I feel that I have always been one who seeks to understand, but it has only been since my attendance at the Ms. Wheelchair America pageant held in NY in 2005 that I started to grasp what your everyday life might truly be like. Spending more time with you over the years has continued to increase my knowledge and awareness and I like to think it has made a difference in how I accomplish my work and in my tolerance of others.

From Donna:

When you were little, I felt I needed to help you out all the time. I learned you would tell us if you needed help, and only when you asked would I help. Although you had grown up, I would still worry about you – like when you called me to tell me you were in New York City for New Year’s Eve.

Your experience makes me look at bathroom stalls differently, thinking of you and wondering if both of us could “maneuver.” In fact, I try to look at all access points for the disabled. I consider emergency access where I work, particularly when the elevator was recently inoperable for a couple of weeks. Having a sibling with a disability has made me more compassionate to others, understanding it sometimes takes longer for a some people to move around their environment.

Because of you, I am not hesitant to approach a person with a disability and ask if they need help. Many people are afraid to do this. At a previous job, I helped a girl with cerebral palsy fill out her application because her hand shook. She got the job and we had an excellent working relationship. I felt good because I asked first, and she said yes.

From Sandy:

I think Mom and Dad struggled early on with how to prepare you for the future—even looking at how the school could be more accessible. I am sure they have had concerns at each milestone—sleepover summer camp at a young age, school, exchange program to the other side of the world at age 16, college, work, etc. In all these situations, you showed us all you could thrive and excel. You opened our eyes about the decisions you must make daily, including finding accessible bathrooms, shops, housing, restaurants, clothing, etc. Life can be difficult—for all of us—but you maneuver through the maze of finding places that welcome you and allow you to enter, daily management of personal care assistants and ongoing considerations so that you live every day fully.

I don’t define our relationship by your disability. We have always managed to find fun at outings and on trips just as any other two sisters might. My children have grown up having an aunt with a disability and have always seen the wheelchair. So for them, acceptance of your diagnosis and abilities has always been a part of their lives and they have seemed more open to being around others with similar disabilities.

Your disability and awareness of the medical and clinical world has been an asset for our family when various family members have had to deal with disabling surgeries or a difficult diagnosis. We have all leaned on you during these times and your insight and experience has guided us through some challenging events and decisions.
Sisters
My lovely sisters, long before I was thought of.
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14 thoughts on “Redefining Disability Challenge – Question 8

  1. Really, you had to use that picture? Dolly was a wonderful seamstress, and probably made all the dresses we were wearing. Hair cutting was not always as successful. Thanks for making us sound good.

    Liked by 1 person

  2. Excellent post–I love that you reached out to your sisters to get their words instead of trying to imagine their perspectives. I think knowing and being around people with disabilities is the best way to become aware of accessibility, and by simply being who you are and doing what you do you’ve taught them a lot.

    Liked by 1 person

    • I’m glad they were all willing to write! There is much to be said for inclusion and exposure as means to break stigmas and encourage dialogue. I am grateful to my sisters for helping me with this week!

      Liked by 1 person

    • Yes – everyone says we look alike. People often I say I look like Sandy, which makes sense because we live the closest geographically. But I really look like Susan.

      Like

  3. I really learned a lot from this post. Thank you, to you and to your sisters, for such honesty. As you know, I’m trying to write a character who can benefit from this insight. I’ve changed my manuscript because of you. Thank you.

    Liked by 1 person

  4. I love the perspective you provided with this week’s challenge post. We oftentimes imagine that we know what someone else is thinking or feeling. Here you has given us a firsthand glimpse of your sisters’ view. Your strength and fortitude were obviously in place from an early age.

    Liked by 1 person

    • As a child, anytime anyone asked me what or who I wanted to be when I grew up, I said, “I want to be like my sisters.” From my sisters, I learned how to be a strong, independent, thoughtful, considerate and kind woman. At least, I learned how important it is to be all of those things. I’m still working on growing up to be like them 🙂

      I am grateful for their honesty, and their willingness to help with this post. I am so blessed to have been born into the family I have. I cannot imagine life without my sisters.

      Liked by 1 person

  5. You are one lucky girl to have sisters like these! And Dee, this is a great post….I think this is one of the best things you do with your blog – just giving “outsiders” the chance to be on the inside of life with a disability for a while. It really does change things up and it makes a huge difference even from this distance in how I go about my interactions.

    Liked by 1 person

    • I am VERY lucky indeed! Thank you so for your kind words. I am glad this spoke to you. I appreciate the praise and I will keep trying to offer more insight as I write. I’m honored to know it has helped you in your life.

      Liked by 1 person

  6. Funny comment from Caroline. I need to send a photo that I have and a picture of you is tucked in at the bottom so all six of us are together. However, you arrived when we were in our teens and our lives have been enriched in so many ways; drying and styling your hair, playing with “Bobby” and including him in mealtime, talking about the birds and the bees, taking care of you to name a few. We are all so proud of you. Still loving the blog!

    Liked by 1 person

    • Thank you Donna. My life is better because I’ve had all of you to help and guide me along the way. I have a great photo of you and me having a tea party, with my hair curled. It’s just packed in a box right now, along with the rest of my life.

      Like

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