A Week of Bliss by Dr. Sean Patrick Dineen

[A note from Karen: Sean was kind enough to write this piece, last fall, and I am posting it now as a reminder of the great times we had, and in hope of more great times to come, after this pandemic ends.]

It was my joy to undergo a great adventure between November 5th and 12th of 2019.

This adventure was a week in the company of an outstanding mentor and friend, Ms. Karen Lynn-Chlup—seven days of laughter and learning, of almond milk and acting, of joy and excitement throughout the state of New Jersey.

Following a period of recuperation after the long flight from Los Angeles, on Wednesday the 6th the excitement began.

It’s been my joy to serve as adjunct professor at Kean University in Union, New Jersey, since 2004. Ms. Karen came to my World Civilization class, on Thursday, and set my students’ hearts and spirits on fire.

She told with excitement and detail of her work to rebuild her body under the able guidance of dance sage, Al Gilbert; the sweat-filled struggle to find genuine employment after being labeled and left to rot by experts, culminating in the first lawsuit under the rehab act, and the publication of her first novel, The Broken Hoof.

The students were speechless with excitement. But the adventure was just beginning.

The next day, we ventured to the New Providence Library for the next experience.

Over the last six years, I have also served as both a volunteer and a paid assistant in the Paper Mill Playhouse’s Theatre for Everyone program, an exciting movement for young people with and without disabilities and their families, led by Ms. Leslie Fanelli, another dear friend.

Karen and I spent an hour participating in movement exercises and the sign language song that begins and ends the program. Karen observed my performance—with me dressed as Queen of the World in a wig and pearls. We dined together later, laughing and learning from great women.

On Saturday we interacted with brain tumor survivor Beth Rosenthal. Karen stood like a giant of spirit, helping, healing, and restoring all.

Sunday, I had the immeasurable bliss of visiting Professor Yvonne Singer, a proud woman with cerebral palsy, and the love of my life. Karen gave out energy and excitement as we joked and restored each other, sharing encouragement and stories.

All too soon, Tuesday morning came. It was time for Karen to return to the West Coast.

Another great experience was in the pocket of history.

I remain deeply grateful, and look forward to our next joy-filled jaunt.

Sean with Paper Mill Playhouse’s Leslie Fanelli and Students

Sean P. Dineen is an Adjunct Professor of History at Kean University and an expert on the history of disabilities and disability rights. He is a native of New Jersey. A published playwright, his personal interests include theatre and popular culture.

Disability Rights THEN AND NOW ft. Judy Heumann, Katherine Perez & Marc Climaco

August 6, 2020

This is a wonderful new YouTube from Judy Heumann and friends about how disability rights have changed over the years. And I know they have changed because they changed for me, and I helped change them.

Please give it a look. You’ll be glad you did.

Separate But Equal is Not Equal

August 5, 2020

In 1976, I began the first civil rights lawsuit that required universities and colleges to admit people with disabilities. The case was settled in California, in 1979, but it set a precedent that took effect across the country. Here’s an inspiring article about disability rights in those days. Just wish I had known I was part of a movement, and not acting on my own.

https://www.nytimes.com/2020/07/22/us/504-sit-in-disability-rights.html?smid=tw-share

–Karen

Keeping Up Your Morale–A Post from Audacity Magazine

July 30, 2020

Nathasha Alvarez is the founder of Audacity Magazine, one of my favorite publications, and she is someone I made friends with along the way. She herself uses a wheelchair, but she doesn’t let that or anything else get in her way. In times past, I did some writing for her on her magazine, but today, I want to highlight a recent article that she wrote about how she keeps up her own morale in this time of pandemic and social hysteria. I am quoting the whole article, below.

If you don’t already subscribe to her writings, just follow this link and sign up at the bottom of the page.

Remember—If I can do it, you can do it, too!

With love, compassion, and courage, I remain

Karen Lynn-Chlup

Now, let’s hear from Nathasha:

How are you? I’d ask you where you’ve been but if you are like me, you have been home for a very long time now.

Have you noticed that when it comes to wearing a mask, we are told that it will help save the elderly and the disabled? You would think that this would be a great reason to wear the mask. But people aren’t willing to wear them. We can go into their arguments about freedom to do what they want with their own bodies so they don’t want to wear the masks. However, many of us hear “You don’t care about the disabled and the elderly. You only care about yourself.”

That’s exactly what we hear when people refuse to wear the masks. For many of us, it’s not a surprise that we are not being considered worthy of living. There are hundreds of articles about this topic.

I am not going to deal with that because I have to focus on my morale. How do I keep myself positive and looking forward to the future when a majority of society including the government doesn’t really see us as worthy to live much less survive Covid-19?

The answer is simple but not easy especially when you feel really low. You have to feed your morale the way you feed your body. You can’t deprive your body of necessary nutrients and expect it to be at its best.

How do I feed my morale?

“cheesy self talk”

I’ve been doing that since I was a little girl. People wonder why I think I am so gorgeous. It’s because I have been telling myself that since I was a little girl. I learned that from my mom. I looked in the mirror after getting ready for the day and I would say, “Gosh you look great!”

I can’t even go to a department store without looking at myself in those mirrors that are all over the place and smile at myself or wink at myself.

It might be conceited but I live in a world that doesn’t see a three feet tall female in a wheelchair as a sex symbol so if I might as well be one to me. I take care of my looks for me. I pamper myself for me. If I don’t love me, how can someone else love me for me?

But that’s not all…

I listen to people who have been to the bottom and made it to the top. Their stories fuel me. They give me inspiration. Lately, I’ve been watching GoalCast videos in the morning while I exercise. It helps my morale. I realize that I am not alone when it comes to struggle, strive, and success. We all have a story.

Journaling

I am building my success story one audacious moment at a time. Like many stories, if there is no conflict, it can get boring. So I am happy when I must face a challenge because once I deal with it, I can add it to my success story.

I don’t compare myself to others. The only time it happens is when people point out my differences. Now I wear my differences proudly.

Every day, I feed my morale a good serving of self love, motivation and challenges to overcome.

It’s a healthy diet. One that I need when I have to hear people say that disabled people aren’t worthy of saving during this pandemic.

What do you do to keep your morale up?

I’d love to add it to my list.

Thanks for being here!

Love,

Nathasha

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Keep smiling!

Karen’s interview with Christine Robinalt on Dyslexically Successful

Recently, I had the honor of being interviewed by Christine Robinalt, a physical therapist and an expert on dyslexia. She and I both have it. Christine and I have both not let our disabilities keep us from being all we can be. Please listen and be inspired!

https://podcasts.apple.com/us/podcast/dyslexically-successful/id1455528917?i=1000478990329&fbclid=IwAR0bdOC51LA47pFH0YdBNFag5fMuuf-N1L8rn-CncF7y4OIB_jRieWTghzU

–Karen Lynn-Chlup

Walking the Walk

For far too long, there have been many social injustices in our world. As a woman with cerebral palsy and dyslexia, I have encountered many inequities and wrong-doings in my life. Yet, I always found a way to keep pushing forward. I always found positive ways to keep on. I found ways to turn my cheek and rise above. Now, with the coronavirus, global warming, disability abuse, the George Floyd shooting, civil unrest and protesting for civil rights fill the air. Where are our civil rights? Who speaks up for us people with disabilities? Who gives a hoot?

Whether you are able-bodied or not, how do you face what you face? How do you deal with all of this? Do you take a moment to look at what’s happening around you, and then take another moment out of your busy life to help the other guy? Where is the “justice for all” in all of this? We all have feelings and emotions, different opinions and viewpoints—how do we come together and live in peace and harmony with equal rights, and dignity, and respect under the same canopy?

The question is—Can we now walk with all people in partnership and policy?

When would YOU like to receive my posts?

[Photo by Jiří Wagner on Unsplash]

Dear Reader,

I have had my blog for some time now, and I want to take a moment to thank you personally for all of your support and dedication. Your responses to my posts have warmed my heart and filled my life. With much gratitude, I’d like to continue dedicating my writing to you–to everyone with cerebral palsy and a learning disability.

Now I have a question for you. I’m sure your schedule is very full and maybe different from the average person’s routine. Maybe you have a day of the week, or a week of the month, or a time of day when you would like to receive my Whispers of Hope blog posts.

Could you please leave me a message in the comments section, below, and let me know your preference? From now on, I am going to try to send one post per month, and I want to schedule them at the best time for you.

I look forward to hearing from you, soon.

With heart and soul,

Karen Lynn

PS: An affirmation is a short statement that we repeat to ourselves in order to change our thinking from negative to positive. Here is an affirmation for today. Repeat it until you believe it, and it will change your life.

Today, I am grateful for the opportunity to participate in the Whispers of Hope community, where I can give and receive the support I need.

Failing to Gain

In most of our daily activities, people with disabilities can accomplish whatever they set their minds to. But it’s important to remember that winning and competing is not always the goal. And while listening to and following other people’s suggestions or advice is fine sometimes, it’s not always the right choice. Let me explain.

Taking action in our lives is important, but only if it feels absolutely right and true for you.

When we take action not because it feels right and resonates within us, but because we have been talked into it, or pressured, our bodies and souls react. This is the sort of winning we want to avoid, because it brings on unhealthy consequences. Our auditory and sensory processing becomes distorted and disturbed. Our bodies often become more spastic, tense, and rigid. As well, our speech impairments can unfortunately become harder for people to understand. We become more stressed and have less stability with our thought processes and what we want to express verbally or on paper. We want and need to do everything possible to remain calm and centered.

When we interact with the people we are closest with, we usually interact with ease. Because we are comfortable and feel safe, thoughts and ideas come easily while communicating. However, when we stretch beyond our comfort zone or circle, trying to be heard, to make our lives better, even these safe interactions can become challenging. Whether it is with loved ones or complete strangers, this is not the time to throw in the towel, throw a tantrum, rush into assumptions, or ruin relationships. This is the time when we need to pay attention, listen carefully to our bodies and minds, hang on, take deep breaths, and take note.

Today is the day I will reach beyond my comfort zone, reach beyond all boundaries, and stay focused and fearless. I will observe myself, mindfully taking note of my feelings, thoughts, level of reaction, and who the people are that I’m choosing to spend time with and listen to.

“Breathing in, I calm body and mind. Breathing out, I smile. Dwelling in the present moment, I know this is the only moment.”

– Thich Nhat Hanh

To Advance and Progress

How many times in the past have you asked yourself… “Why did I say that?” Or, “Why couldn’t I have been more candid, clear, and effective about what was on my mind, with the people I was talking to?” How many times have you looked back on an important meeting and wondered, “How could I have communicated my goals and needs better, while not being stalled, stymied, or intimidated by the structural institutions in place? How could I have been more effective, centered, and in control of my emotions during this meeting, while staying focused, steadfast, and true to myself? What did I learn, share, get across, or teach in the process? How did I share a truth and help to build an alliance for myself and others?”

So I pause, take a deep breath, and think about what I really want to say, what I really want to convey to others.

I begin by being me, my authentic self. I turn inward, and I dig deep to adapt and adjust to what is being said. I pay attention, and calmly put my thoughts and feelings in place. I take my time. I refuse to feel pressured. I then start to verbalize my position, placing all the facts on the table. I start a real conversation.

These are just a few thoughts that fuel us as people with disabilities. Because we have often had such a hard time getting our feelings and thoughts across to “the other side,” we naturally start to question our own abilities; we question our reasoning, our emotions, and our ultimate purpose. This comes from the fear that we will not be understood, will not be accepted in the world, in our communities, or have the skills needed to ensure that we are not left at home watching television all day or playing endlessly on the computer.

How do any of us with cerebral palsy really move forward when all the above is at stake? How do we really learn to get ahead in this world? How do we find and define the level and line to reach for to be real or intimate on a scale of amount, quantity, extent, or quality, while still being respected? How do we find the intestinal fortitude to be able to move our lives forward?

The question for you is: how do you move forward in your life towards a place or a point where you can be where you and you alone want to be? A place where you feel good, feel you have purpose, feel heard, and feel fulfilled? How do you open those doors for yourself? How do you make opportunities happen and avoid just sitting back and waiting for life to happen to you?

We have to keep moving in the direction of our hearts, minds, thoughts, dreams, and goals. We have to change the way people look at us by being kinder, more understanding, by building bridges, by bringing together those with a common bond or trust and who will believe in us! It’s about going the distance when others say you can’t or that you are not capable! It’s about rising above, taking chances, and risking it all.

“Twenty years from now you will be more disappointed by the things you didn’t do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sail. Explore. Dream. Discover.”

–Mark Twain

Are We Choosing to Become the Best?

It seems that too often in today’s society, priorities are backwards. Parents of people with disabilities are not given the real support and opportunities they truly need to live their lives and grow and develop into the healthy-minded people they choose to become. People with Cerebral Palsy are no different. We need to flourish too! We need a set of circumstances that makes this possible. A set of occasions, moments, and options to make potential, hopes, and dreams happen. We need to open new doors and seek out new avenues to make these ideas achievable, so that those with disabilities can engage in activities and interests that spark a desire, that foster motivation…. that give our lives meaning!

Instead, the money allotted is wasted. Little really goes toward nurturing and developing our disabled children’s hearts and minds. Parents try to speak up, be an advocate for their child’s needs. They try to work through the noise and chatter, but is anyone really listening?

Experts in the field, who have attained so-called “special skills” to work with the disabled and their families, are obsolete. They try to guide our children with their scholarly thinking, but have little or no insight regarding what it is to live or be impaired with a physical disability. Their methods and ideas are old fashioned, outmoded, and out of date. These experts, who are not directly involved, make (or try to make) decisions for our children, along with both young and older adults, based on temporary conveniences, quick fixes, and what they “think” might be best for that individual. They try to push their own specific belief onto the child and the parent.

As the daughter of a very progressive parent, raised in the 1950s with Cerebral Palsy, I know firsthand how my mother did everything in her power to make me the best person I could become. She wasn’t intimidated by the experts, she wasn’t silent, and she didn’t stop pushing to be heard.

When will our educators, counselors, and social workers be willing to start listening to us, to face us? When will they answer our hard questions? When will they master new tools to use? When will they stand up to the truths that harm and hurt and that no longer work for our children with disabilities? When are they really going to give more of themselves than they take? When are they going to listen to our cry and be more sensitive to our voices? When will they be taught and trained to be quick to detect or respond to slight changes, signals, or influences? It isn’t impossible, if we all have an open mind!

I will close with a quote from ESPN magazine that I found very poignant:

“Impossible is just a big word thrown around by small men who find it easier to live in a world they’ve been given than to explore the power they have to change it. Impossible is not a fact. It’s an opinion. Impossible is not a declaration. It’s a dare. Impossible is potential. Impossible is temporary. Impossible is nothing.”

How will you choose? Will you take the dare?

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