A Hope to Believe
A Hope to Believe

Categories: Community Life, Health

A photo of Mandy Harvey, a jazz singer.

By Guest Blogger Wayne Connell, Founder and President, Invisible Disabilities Association (IDA)

I am sure you have heard of the phrase, “Well at least you have your health.” People use these words as encouragement after a tragedy or loss of a friend or loved one or maybe even for themselves. Yet, what if you don’t have your health? What if life has thrown you a curve ball caused by illness or injury? What if your body went from healthy to having a disability, sometimes suddenly?

As with any loss, a person whose life is changed by tragedy and disability usually experiences the five stages of grief: denial, anger, bargaining, depression and acceptance.

The question lies in how does one move toward acceptance when his or her world has been rocked by illness or injury? I believe it is found in the word “hope.” What is it? Merriam-Webster defines hope as: “to want something to happen or be true and think that it could happen or be true.” It seems like a platitude: “Let’s all hope for better days.” What if better days never come? Can we still have hope? I say, “Yes!”

I believe hope is really an action and not just a feeling for something better. Hope is looking at the difficulties of life and still smiling. Hope is when someone in unbearable pain comforts someone else going through a difficult time. Hope is when someone with a disability does something amazing that seems to be insurmountable. I think of Mandy Harvey.

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The Strength and Success of Native Americans with Disabilities
The Strength and Success of Native Americans with Disabilities

Categories: Community Life

A photo of a Native American woman in a wheelchair who is carrying a sign for an awareness march.

By Guest Blogger Therese E. Yanan, Attorney at Law, Co-Director for Program Services, Native American Disability Law Center

According to the 2010 Census, 16 to 18 percent of Native Americans have a disability, compared to 11 percent of Anglos who have a disability. Consistently high rates of poverty and unemployment in many Native American communities are dramatically increased for those with a disability. Transportation, housing and accessing community-based services are significant issues for Native Americans with disabilities.

For the past 20 years, I have worked on the Navajo Nation and Hopi Reservation and with other Native American communities across Arizona and New Mexico. I have also worked with other communities and organizations across the country that focus on addressing barriers for them. What I have learned is the strength of humor and community. Many times, I have talked with friends, who have faced situations that would push me to the edge of my patience.

I have a friend who is Navajo and has a spinal cord injury. She lives independently and drives her own van. I was once talking with her and apologized for keeping her from getting home. It was winter and getting dark, and I knew that she had a long drive that included a dirt road to her home. She laughed and assured me that she had more than enough time to chat, and it would actually help her because she had to wait for the mud on her road to freeze before she could get home anyway. Many in her community could park their cars at the pavement and then walk to their homes – a path she is unable to navigate because of her wheelchair. Was she impatient or frustrated by her delay getting home at the end of the day? Not at all, she merely stayed and we continued to talk.

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The Hidden Lives of Caregiving Youth
The Hidden Lives of Caregiving Youth

Categories: Caregiving

Photo of Connie Siskowski smilingBy Guest Bloggers Connie Siskowski, RN, PhD and Shelley Gottsagen, MNM, American Association of Caregiving Youth

If someone has a disability, some people may wonder, “Why in the world would you have a child?” For others, life happens unexpectedly while already a parent and results in a disabling condition. Often people don’t think about the back story or they just don’t understand; they are simply ignorant and uninformed.

The reality is that estimates show that more than six million children in the United States are raised by parents with disabilities!

When someone is injured, particularly today among the veteran population, or when someone is older and becomes less independent, there appears to be greater understanding of their need for additional support.

Often, this support is provided by children who take on caregiving responsibilities for their parents, siblings, grandparents, great-grandparents or extended family members. Sometimes, children are happy to help however they can while others are assigned, and yet others, such as in single parent or grandparent households, have no choice.

Do these children give care at home and go to school (if they even make it to school, much less on time) and say to their friends or teachers, “Guess what I did this morning?” No! They are silent, often feel alone and that “nobody else does this.”

The more than 1.3 million child caregivers, ages 8-18 years of all types of disabilities and health conditions, are an invisible part of the long-term care system (Young Caregivers in the U.S., 2005). They are not “counted” when the calculations of the contribution adult family caregivers – now topping $522 billion (Rand, 2014) – are made. Nor are they typically recognized during November, National Family Caregivers Month.

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