Sometimes life doesn’t work out according to plan. We all get sidetracked and sideswiped at times. When Jodi James was killed in a car accident I felt sideswiped. For a while I was lost and confused. I couldn’t understand how such a horrible thing could happen to such a wonderful person. It was shocking to be reminded how fragile life was and how quickly things can change sometimes without any warning at all.

Fast forward to 2011. Two years later, I would lose another important person in my life – my mother. My mother had been battling cancer for some time. In fact, one of the reasons I published Unclipped Wings when I did was to be sure she saw it. I couldn’t stop or fix my mother’s cancer, but I did publish Unclipped Wings in time for her to see it while she could still enjoy it.

A small thing I know, but sometimes the most important things we can ever do are the small things, like connection and love. My mother did not make it to Thanksgiving or Christmas and Unclipped Wings did not cure here cancer, but she was never alone and she knew that;

Many of you have read Unclipped Wings and you have shared Unclipped Wings with others. I am constantly hearing from people who say they normally don’t like poetry, but can really relate and see themselves in Unclipped Wings. What a compliment.

It is nice to be reminded that the little things we do make a difference, especially when sometimes the big things are out of our control.

I am glad you have enjoyed Unclipped Wings, and I appreciate your support.

Unclipped Wings isn’t about always being perfect. It is about being able to be who we are despite the challenges we all face. It is my sincerest hope that you will join me and soar on Unclipped Wings.

Please share with all the wonderful mothers out there.

May you soar on unclipped wings,
~ Ramona Harvey

What is Disabilism?

Simply put it is discrimination against people with disabilities.

I would like to say that this is something that rarely happens, but unfortunately it happens all the time. Yesterday a friend of mine was denied access to a restaurant because she had a service animal and many of you have heard about the boy in Texas who was not allowed to participate in communion because he has cerebral palsy…

But it has happened to me also a store owner refused to sell me and a friend of mine a soda. We had money but the store owner would not take our money…. a stranger behind us line was nice enough to take our money and buy the drink on our behalf.

But those are just a few examples, stuff like that doesn’t happen always and not everyone is like that, right? The quality of life for people with disabilities is better now. Thankfully we have laws like the ADA (Americans with Disabilities Act) that protects people with disabilities…

I agree. We have come a long way and people with disabilities have had better access to education and other resources they didn’t have access to in the past. We are a lot more unlikely as a whole to accept the blatant discrimination of not selling a soda to someone with a disability as okay.

But we have a long way to go. Not just in terms of physical access barriers, but systemic biases which are harder to see and combat It is because of the systemic biases that grass roots organizations like ADAPT, which is in Washington today, exists. ADAPT is advocating for the people with disabilities to have the choice to live in the community instead of being forced unnecessarily into often more costly nursing homes.

Disablism does exist, but the problem we have now is that people have seen how far we have come and they think the problem is fixed. We do have laws like the ADA designed to protect the rights of people with disabilities – but that is just a first step.  It is Because disablism still exist that we need to work to make sure that these laws are not only enforced but protected.  We have come a long way but we still have a long way to go.

This is a picture of Jodi and Ramona at the beach. Both women are in their wheelchairs.

Long Live Jodi James the woman who always had my back, and still does.  A woman I trusted completely.  I have been forever changed by both her life and her death.

She was only 38 when she was killed in a car accident.  She died the day after we last talked, and a week before we were going to get together to celebrate our birthdays and the fact that we had both survived another year.  We were supposed to go to the aquarium in Chicago, but instead I went to her funeral wearing an ADAPT shirt, just like I promised her I would – the day I promised her I would not let her die in a nursing home.  I kept that promise.  I just wish she had made me work harder to keep it.  We both thought we had more time.

She did not die in a nursing home, but instead while doing the thing she loved most – driving.  I understand her love for driving because it is something we both shared.  She loved the freedom of it, and she loved the fact that when she was behind the wheel nobody saw her chair or her disability. She was just like everyone else on the road.

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About Jodi James – By Ramona Harvey
September 5th, 2009

My friend Jodi James died today (September 5, 2009). I don’t know if you ever talked with her, but she was definitely worth talking to. I met and got to know Jodi James because of our efforts to stop the corruption of the Indiana Statewide Independent Living Council (ICOIL), and improve the quality of life for folks with disabilities in the state of Indiana.

When I joined Indiana’s SILC I was naive. The council was supposed to be starting over and going to do things right. I was a new member of the council and I believed that. But Jodi James had been on the council before, and so she knew from her own experience how bad the council had been. She would not have joined the council again, but she was approached by several of the council members who begged her to rejoin the council because they were turning over a new leaf.

She accepted re-appointment on the Indiana SILC because she believed in the possibility of a new uncorrupted council that truly empowered people with disabilities. She believed that it was possible for Indiana to have a SILC that did not hide its actions from the very people it represented, because when you’re doing the right thing. There is no need to hide.

She believed it was possible for the SILC to actually empower people with disabilities in Indiana. She didn’t just say people with disabilities matter and are important and should be empowered, because that is what looked good on paper… but she acted on that belief.

Jodi James was once the Chair of the Indiana SILC (ICOIL), and for a brief moment in history, perhaps the only time in history, the Indiana SILC was truly consumer controlled…

When Jodi James was the chair of the newly restructured council, she didn’t just give lip service to the idea it was time to do things right, instead she acted in a way to ensure that things were done right. Jodi James didn’t just work hard to make sure that ordinary folks like myself had a voice, but once we had our voices…. she listened and she worked hard to ensure that even those people she did not agree with had whatever accommodations they needed to participate.

Jodi James was an advocate, and a leader, and a member of ADAPT who understood that sometimes when people’s rights and freedoms are being trampled on, that you just have to be willing to say enough is enough.

She was a true leader… not the kind that has to hide behind codes of conduct and closed door meetings, but the kind who was willing to roll up her sleeves working hard for what she believed in. She was the kind of leader who was willing to openly speak the truth even if it meant that she would get shot at…. and she was shot at….  we both were.

Jodi was an ideal chair, for an ideal SILC council in an ideal world. But we don’t live in that ideal world. Something Jodi knew better then most. Jodi was slandered, tried, and convicted without due process, for a crime of believing that NOW was the time to stop the corruption, the fraud, and the abuse of people with disabilities by those folks who are supposed to be protecting us, She believed it was time not to try and circumvent the laws that are supposed to protect or rights, but to enforce and uphold them before it becomes too late.

Jodi was not afraid to stand up for her rights the rights of others. Jodi was the type of person who stood by people who were doing the right thing, not because it would benefit her, but because it was the right thing to do. I am privileged to have known her, and proud to have stood by her side… and I would do so again in a heart-beat.

Jodi was so many other things to some many people. She was a phenomenal, and a beautiful woman. Jodi and I were a team and we were friends. I have been very fortunate that Jodi James is a part of my life. She will always be a part of my foundation and for that I am grateful.

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Jodi was my sister, just as much as my biological sister. When Jodi died she took a part of me with her. I would probably still be completely lost if she hadn’t also left a part of herself with me. I am not in the least bit glad that she died, in fact I still ache on a daily bases – but I am very glad that she lived – and she did live.  She was here for the party – and I for one am grateful.

But what is poetry? Some types of poems, like Haiku, are rigidly structured, other types appear to have no structure or form at all.  Unlike other forms of writing, even basic grammar rules may or may not apply.  Poetry can rhyme, but it doesn’t have too.  A poem can be very short consisting of only a few words, like my poem “Please” (which is made up of only seven different words – including the title), or it can be long – even epic.  A poem can be used to express an emotion, tell a story, describe a moment, or be simply a learning tool and pneumatic device to help us remember.  Poetry isn’t like any other written art form, but considering the oral tradition from which it originated, this is not surprising.

Some people say they don’t like poetry, because they only like stories.  This is ironic, because poetry was designed for story-telling.  Before books were common, poetry was used to pass on stories and information from one generation to the next.  Poetry originates from a great oral tradition which is why it is often meant to be heard, not just read.

Not everyone will like, understand, or relate to every poem. It is okay to have your own unique tastes and interpretations.  April is National Poetry Month: If you learn nothing else about poetry, I would like you to remember this.  Poetry is an art form that anyone can enjoy.  You don’t have to be a scholar, intellectual, or poet to understand or appreciate poetry. Poetry isn’t something to be intimidated by.

I know I am not telling you anything you don’t already know (as you listen to your favorite songs), but everyday all of our lives are touched, enriched, and influenced by poetry.  This is a good thing, because poetry helps us to connect to and understand others as well as ourselves. I for one think that is a good thing.  I hope you do too.

The poem begins: “Nobody else does it – so I won’t

That is how we get to the place that we don’t”

If you have been following “Unclipped Wings” on Facebook you may have noticed, some posts about people who have not been deterred by the seemingly impossible.  Often, we get overwhelmed. We think a problem is too big and we are too small.  Yet, over and over this week, I am reminded that our actions do matter.  We can make a difference as individuals, especially when we are working together.

Troy Yocum could be at home watching TV and wishing he could do something to help needy military families, but he isn’t.  Instead, he is a on a 7000 mile drumhike.  He is hiking across country to raise awareness and money in order to help needy veterans.  Will he reach all of his goals? I don’t know. I do know he got my attention and has already been able to help several people.  That counts for something.

But the small stuff is important too.  A twelve year old boy named Max, who has terminal cancer, made a wish that he would receive 1 million get well cards.  Now people from all over (including me), are sending him the cards he wished for.  Whether or not Max receives a million cards, the cards being sent make a difference. It is neat so many people are willing to send a card, but the coolest thing is how this twelve year old boy has touch the lives of so many – just by not being afraid to have and share what many would consider an impossible dream.

So, “why continue to care if others just don’t?  Except that we need to.”

When I got up today I was very aware that I was a person with a disability.  There was no denying it as I transferred into my chair and began my morning routine.  It is obvious that because of my disability there are certain things I am just not able to do – at least not in the way most people do them.  Just looking at me you can tell I have a disability, even if you can’t tell I have cp.  But you cannot tell who I am just by looking at me or classifying my disability.

Growing up as a person with a disability has had a profound impact on my life and my perception of the world.  As is pointed out in my poem “Your Child” even something as simple as a flight of stairs is a different experience for me then it was my brothers.  But far too often we see a person’s disability without seeing, the person.  A person isn’t and should not be defined by their disabilities, yet it happens all the time.  My disability is a part of who I am, but it isn’t who I am.

The same is true about “Unclipped Wings”.  Sometimes people assume that because I have a disability, “Unclipped Wings” is a poetry book about disabilities.  This isn’t true.  I did draw on my experiences as a person with a disability when I wrote some of the poems, but “Unclipped Wings” is not about living life with a disability. (Though we all have them)

“Unclipped Wings” cultivates inclusion of all people not just those with disabilities, because it is a book about life and many of the challenges we all face.  As a person with a disability some of my challenges are obvious, but we all have our own obstacles to overcome.

All of us have the same basic needs.  We all need food, water, shelter, and love.  We also all have our own abilities and disabilities. Everyone is unique. While we may appear different when it comes down to what matters most, we are all more alike then unalike.  It is easy and sometimes natural to judge people and their abilities and potential by their appearances, but we should try to avoid doing that.

We don’t all have the same abilities, but what we chose to do with the abilities we do have is far more important then what are abilities are.

We are still waiting to see what will happen at a damaged nuclear power plant.  Nobody knows for sure what is going to happen or what the long term impact will be.  For good reasons people have significant health concerns and are afraid. It is going to take a long time to pick up the pieces of this tragedy.

Times like these remind us how fragile and valuable our lives are.  Many people are scared.  Some may feel helpless and powerless, but do not become hopeless.  Focus on what needs to be done today in order to minimize damage and danger.  Recovery will not be easy but stay focused and begin the slow process of recovery and healing one step at a time.

If you have read “Unclipped Wings”,  you know that I do understand that it is not easy to pick up the pieces when “life takes us to where we don’t belong”.  But sometimes life doesn’t give us much choice.  Nobody said life was fair or easy.  It may be scary, but resist the urge to give up.  We can never be sure what will happen – or what will rise up out of the ashes.

For me it was “Unclipped Wings”.  My heart goes out to the survivors and everyone touched by this tragedy.  May you receive what you need – when you need it, so you can recover and heal.   May you overcome and find yourselves soaring on “Unclipped Wings”.

My thanks also goes out to all the “unnamed heroes” who have, are, and will step up to the plate.  I may not know your name, but I value what you do to make our world a better place.

Ramona Harvey

View the video on YouTube here!