2011 November — Invisible Disabilities Association

Imagine with IDA Special Guest, Lori Frisher

November 28, 2011 by admin 2 Comments

Lori Frisher, a woman who has lived with moderate to severe hearing impairment, shared her thoughts on living with invisible disability as a Special Guest at the 2011 Invisible Disabilities Association Honor Awards Banquet.

Lori said, “Imagine the invisible disability: Not hearing the sounds of a kiss or child’s voice, let alone your own voice.”

Lori has been an Honor Student, two time cancer survivor and she was recently an Emmy Nominee for her documentary as the first recipient of the Esteem Implant, along with the Cochlear Implant she already had.

Since receiving the Esteem Implant, Lori added, “All the day to day experiences we take for granted, I began hearing for the first time, which has become life-changing for me.”

ARTICLE RESOURCES

Lori Frisher’s Website, Silence Has a Sound

ADDITIONAL RESOURCES

New technology helps local woman hear. KWGN Channel 2 Colorado.

A revolutionary way to change the way the world sounds. 9News Colorado.

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more! Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!

Filed Under: IDA Events, Invisible Disabilities Assoc. Awareness Tagged With: advocate, awareness, banquet, disability, hearing impairment, inspiration, invisible disabilities, Lori Frisher, personal story, speaker, spreading the word, video

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Fearless: Service Dogs Offer Hope and Peace of Mind

November 28, 2011 by SueKindred 4 Comments

I subscribe to a blog called Fear-Less. It’s about taking charge of your life … moving through fear to the truth … which is never words and is always the feeling. Fear-less means having less fear, but FEARLESS … well that means intrepid, brave, daring and courageous. All synonyms for people living with an invisible disability—every second of every day. IDA, the Invisible Disabilities Association, has a new motto: Invisible No More. And, to do that … to be that, you have to be FEARLESS.

One way to be invisible no more is to show up to life every day with a service dog at your side. These highly trained dogs step into the darkness and help individuals – and their families – cope every day with pain and fear and rise above it. These folks begin to have hope. To believe that today, just for today, it’s going to be OK. And, Hope is Good!

Not only does a service dog offer hope, peace of mind and help with the fear and pain – they are a beacon that allows the public to understand that sometimes what they can’t see is really the truth. Heads turn when a service dog and his handler walk into a room, and just by being present they help raise awareness about invisible disabilities. It’s not uncommon to hear whispers of “why does that person need a service dog, they look OK”, or “they’re certainly not blind or in a wheelchair, why do they need a dog?”

At Guardian Angel Service Dogs, not only do we provide hope for people fearlessly coping with invisible disabilities, we are raising awareness about the myriad of ways that service dogs can help people who “look good”.

In this season of giving and gratitude, I’m grateful that there are people who make profound changes in the world around them by fearlessly navigating their life with a service dog by their side.

RELATED ARTICLES FROM IDA

IDA’s Service Animal Links Page

More Than Just a Pet

NEW ADA Revisions Limit “Service Animals” to Dogs

UPDATE on Author: Sue Kindred has resigned from her position with Guardian Angel Service Dogs.

About Sue Kindred

Sue Kindred is the former Executive Director of Guardian Angel Service Dogs, Inc, a non-profit organization whose mission is to provide awareness about service dogs, as well as providee service dogs for individuals and families struggling with invisible disabilities. Additional Resources Diabetic Alert Dogs and Warren Retrievers.

Filed Under: Accessibility & Assistance, Living with Invisible Disabilities Tagged With: asperger's, autism, diabetes, disability, Guardian Angel Service Dogs, illness, injury, invisible disabilities, pain, ptsd, seizure disorder, service dog, traumatic brain injury

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Invisible No More: Jodie Akers

November 21, 2011 by admin 1 Comment

Through the project, Invisible No More! the Invisible Disabilities Association is bringing awareness, compassion and belief to millions living with debilitating conditions, shining a light on the “invisible” and making these valuable, incredible people Invisible No More!

This video features the story of Jodie Akers, a young lady in the United Kingdom who lives with POTS (Postural Orthostatic Tachycardia Syndrome). In the midst of her challenges, Jodie loves to encourage and educate others through her YouTube Channel and her website, POTS Awareness.

UPDATE: Jodie’s story was published in the Derby Telegraph on November 28, 2011. Jodie wants to make people aware of her life-altering and rare illness.

Learn More About Invisible No More TV	Go to Invisible No More TV Channel
Join Invisible No More TV on Facebook	Submit Your Invisible No More Story
Order Invisible No More T-Shirts and More	Order Invisible No More Wristbands

About

Filed Under: Becoming Visible, Invisible No More, Personal Stories Tagged With: awareness, illness, invisible disabilities, Invisible No More!, personal story, POTS, spreading the word, support, video

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Falling Off the Mountain of Trauma

November 16, 2011 by Angela Pierce 5 Comments

Have you ever been in a car accident or known someone who has? Have you ever experienced another type of accident that either injured you or left you fearful? Have you ever had, or know someone whose had a serious health condition or one that scared you? Most of us can identify with one of these situations. By definition, you’ve lived through trauma, which is defined as a wound or shock produced by sudden physical injury or an experience that produces psychological injury or pain.

When you hear the word “trauma”, what comes to your mind? Most people would picture a car accident, a heart attack or someone serving in the military who has been seriously injured or has seen others get shot or killed. While this is true, trauma extends far beyond the common pictures or stereotypes in most of our minds. For example, this month we as a nation remembered ten years back to the attacks of 09-11. For many people who may not realize it, 09-11 was a traumatic experience, regardless of where you were when it happened. Reality is this: Trauma is much more common in most people’s lives than we realize. Our human nature does not want to admit this, as it is very painful and embarrassing. Unfortunately, running away from trauma or sweeping it under the rug only makes it worse. Trauma is a one type of an invisible disability and a mountain that many people “fall off of” metaphorically.

Many of you may know my story that in 1985, I had a serious rock climbing accident, falling 125 feet and breaking my bones in 168 places. At the time of my accident, I realized that I had suffered serious physical trauma. However, just as damaging, if not more damaging, was the psychological trauma. It was not until 17 years later that I got professional counseling to help me through my accident. What I learned from my counseling is that I had not only suffered physical trauma, but also serious psychological trauma. My counseling was very helpful because it got me to open up, admit some difficult struggles I was having, and it helped me to learn to live with myself regardless of what I had been through.

In summary, many people are living with ongoing trauma and don’t realize it. I understand that the subject of trauma is serious and not one that many people enjoy reading about or discussing. However, my intent in writing this blog is that people will be honest about their lives as well as those they care about. Trauma, as bad as it is, can be managed and people who go through traumatic difficulties, can find peace and freedom to live their lives.

About Angela Pierce

In 1985, Angela Pierce survived a 125-foot free fall while mountain climbing, breaking her bones in 168 places. Her story of survival is a miracle. The lessons she has learned over the last 27 years are an incredible inspiration to others who must climb their own mountains every day. Visit her website, Falling Off the Mountain.

Filed Under: Living with Invisible Disabilities, Personal Journey Tagged With: accident, disability, injury, invisible disabilities, personal story, post traumatic stress disorder, trauma

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Photographer Uses Her Camera to Tell Matt’s Story

November 14, 2011 by admin 1 Comment

Freelance Photographer, Ilona Berzups, had been spending time at Tent City 3, one of three Seattle area homeless encampments. Ilona said, “I’m a photographer and my storytelling tool is my camera. I have a deep interest in humanizing those who are beaten down and marginalized in society, a deep interest in re-sensitizing people to their less fortunate neighbors by making it personal.”

Matt had been homeless for much of his adult life and living in a tent at this camp for the past three. Although Ilona had been visually documenting the camp and getting to know the residents for about a year, she had never talked to Matt. She noticed the scaring on Matt’s body and face, in which she and many others often assume was the result of being burned. Ilona admitted, “I wanted to meet this man but for weeks I struggled with my apprehension at facing Matt’s disfigurement, experiencing incredible guilt for being so weak towards another human being. I choke up thinking about it.”

Finally, she was introduced by another resident and friend of Matt’s, Miss Merrita. “When I met Matt what surprised me the most was how all my preconceived notions and fears immediately melted away. He was just a pleasure to talk to – interesting, articulate, sincere – and then I saw Matt ‘the man,’ not the homeless man or the disfigured man – just this amazingly resilient human being” Ilona described.

It turns out that Matt had never been in a fire at all. In fact, he has actually lived with 11 types of cancers since he was just two years old. One of the cancers is called, basal cell nevus syndrome, a genetic form of cancer passed down through his family for six generations. Matt lives in constant pain and has had over 1,700 surgeries, all of which have left many scars.

In addition to a very long battle with illness and homelessness, Matt has also endured a discrimination that most cannot fathom. Not only do people stare, but they also scatter on the bus and he has even been called a monster. After this kind of treatment, a person may assume Matt would be an angry man; yet, those who know him, call him very special, loyal and loving friend.

In one of their meetings, Matt told Ilona, “I want to change the way people see the less fortunate, homeless, disabled, however they want to call or name them, we are all human beings and all have rights to certain things in this life.”

Ilona quickly decided she wanted to create a photo essay to capture the many facets of Matt’s life. Ilona explained, “Matt’s journey has been incredibly hard and still inspirational. I’ve been able to capture a part of his journey visually and my hope is that it be received with the sensitivity and care it deserves.” Ilona added, “My desire is that his visual story will make others examine how they see and (consciously or unconsciously) treat those who are different.”

The essay was just released on November 14th and is titled, Walking with Giant - One man’s battle with homelessness and debilitating illness.

Matt was a Special Guest at the Invisible Disabilities Association’s 2011 Honor Awards Banquet. He shared a bit of his journey, which brought the audience to their feet! Matt’s story is inspirational and will change your life and your mind about judging others, before taking the time to get to know them. Read full story and watch his video.

Photo for this article copyright Ilona Berzups, used by permission.

ARTICLE RESOURCES

A Lifelong Journey with IDA Special Guest, Matt Barrett (Article and Video)

ILONA BERZUPS Photography

Ilona’s Photo Essay, Walking with Giant – One man’s battle with homelessness and debilitating illness.

ADDITIONAL RESOURCES

Order Matt Barrett’s Poetry Book, A View from the Street

Matt Barrett’s Website, A View from the Street

Matt at the 2011 Invisible Disabilities Association Awards Banquet

About

Filed Under: Living with Invisible Disabilities, Personal Journey Tagged With: awareness, basal cell nevus syndrome, cancer, disability, homeless, illness, invisible disabilities, Matt Barrett, pain, personal story, photo essay, photography

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I Can’t Do This Anymore

November 10, 2011 by Kris Harty 2 Comments

“I can’t do this anymore.”

“What?? You have to keep going. You can’t quit. You’re needed. You’re fantastic at what you do.”

“No, it’s too hard. I’m exhausted. There’s too much to do and never enough time. I’m fighting on every front and I have no more fight left. I’m tired of being responsible, tired of doing it all and doing it well. Really, there’s barely time even to do a lousy job at the required basics.”

My friend was struggling in her job and at home. I didn’t like what I was hearing, but I understood. I’d previously slid down a similar slimy slope.

There were no grab bars, no traction, no hay bales to cushion the landing along that slope. It was all downhill, like a runaway sled careening down an icy hilltop.

Has your sled slipped down that same slippery slope of overwhelmingness?

I’ve been there more times than I’d like to admit to anyone, most especially myself. I’d wanted to quit workplaces in the past, I’ve wanted to quit my own business, I’ve wanted to quit as a patient, I’ve wanted to quit watching loved ones as patients.

I’ve wanted to quit. But it’s been seldom when I’ve followed through on that desire.

There’s much I have to learn, but this I know: the ‘how’ of how we keep going when we can’t keep going, might be found in a simpler answer than we realize.

The ‘how’ lies in hope. Consciously or unconsciously, we hang on to hope. We hope for a better day, situation, outcome. We know it can be better than it is. We wait for the day when it is just that. We do what we can to bring it on, and if there’s nothing we can do, we patiently plow through the days until the sun glints through the clouds.

Along the way, we hold on to the hope of the heartfelt relationships of our lives, the intrinsic value and purpose our relationships and work bring us, and the unexpected humor that catches us off-guard.

There is funny in almost everything, including overworked, underappreciated, ‘get me the bleep out of here’ workdays and at-home days. During some past jobs, I had been known to keep going merely by telling myself that the workplace, in all its messed up unglory, was there simply to entertain me. And not only that, but I was paid to be an interactive audience! I silently voiced a ‘bravo’ for true-to-form stellar performances from colleagues, administration and customers.

I could choose to be either annoyed or amused by their antics and interactions with me. When I chose to become detached and amused, the day was not as bleak as it had been. There was reason to chuckle and smile. From there, I could pass on the good humor, so to speak, to others and be re-energized by it myself. It might be an unorthodox coping mechanism, but sometimes unorthodox is what survival requires.

You can so do this, too. Bravo, you!

#####

Reprinted with permission from the Journal of Nursing Jocularity.

About Kris Harty

The Short Chick with the Walking Stick is Kris Harty, Stickability Specialist. Kris’ expertise as an entrepreneur and a lifelong patient helps entrepreneurs and those in healthcare – on the giving and receiving ends – to persevere and Stick To It-No Matter What! Kris speaks, writes, facilitates and regularly contributes to online medical journals, in addition to recently publishing her first book A Shot in the Arm and a Strong Spirit: How Health Care Givers Help Patients Persevere. She can be reached through her company's Web site, www.ShortChick.com or call 1.877.711.KRIS or through any of the links directly below.

Filed Under: Living with Invisible Disabilities, Personal Journey Tagged With: author, discouraged, finding humor, illness, perseverance, personal story, rheumatoid arthritis

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Invisible No More: Milly

November 10, 2011 by admin Leave a Comment

This video features the story of Milly, a young lady who lives with Dysautonomia/POTS, HMS and Dysmotility. She is the author of the unpublished book, Trading Sorrows and is working on one called, New Mercies. Despite the daily challenges Milly faces, she strives to encourage and educate others through her YouTube Channel, Flyinhyy.

Learn More About Invisible No More TV	Go to Invisible No More TV Channel
Join Invisible No More TV on Facebook	Submit Your Invisible No More Story
Order Invisible No More T-Shirts and More	Order Invisible No More Wristbands

About

Filed Under: Becoming Visible, Invisible No More, Personal Stories Tagged With: awareness, disability, doctors and nurses, Dysautonomia, illness, inspiration, invisible disabilities, Invisible No More!, personal story, POTS, spreading the word, support, video

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A Lifelong Journey with IDA Special Guest, Matt Barrett

November 5, 2011 by admin 8 Comments

Matt Barrett is a 46 year old man who has battled 11 types of cancers since the age of two, including basal cell nevus syndrome, a genetic form of cancer passed down through his family for six generations. He has had over 1,700 surgeries and has lived with unbearable pain and fatigue for decades.

Matt has also been homeless off and on for much of his adult life. He has lived in Portland, in Los Angeles under a bridge with The Trolls (a group of homeless street kids) and in what is called, The Hole in Seattle. Until last September, he lived in a tent in Tent City 3 in Seattle for three years.

In addition to the battle of illness and being without a home, Matt has also lived with discrimination that most of us cannot fathom. Due to the surgeries Matt has had on his face, he has endured stares, dirty looks and has even has been asked to leave stores because he was “scaring” someone’s child.

Matt’s home for 3 years

You would think after a life of being treated this way, that Matt would be a bitter and angry person. Nevertheless, for those who take the time to get to know Matt, they find him to be a very kind, loving and giving man. What’s more, they are inspired and their lives are deeply enriched.

In 2011, Freelance Photographer, Ilona Berzups was so moved by Matt’s story that she embarked on a photo essay project. Read full story here.

Also in 2011, Matt was determined to travel to Colorado to attend the Invisible Disabilities Association’s Awards Banquet and to spend time with a fellow high school classmate. He had been wanting to come for many years, but after getting more bad news from the doctors about the tumors in his brain, nothing was going to stop him.

When IDA found out he was coming, we re-arranged the evening’s schedule and invited Matt to be a surprise, Special Guest Speaker. Hall of Fame Speaker and nurse, Karyn Buxman, RN, MSN gave a short introduction before Matt arrived on stage. Just that glimpse into his life threw the attendees to their feet when he stepped up to the podium.

Matt briefly shared about his journey and appreciation for IDA’s compassion, awareness and support for him and for others. There was not a dry eye in the house, as lives were changed by Matt’s incredible lifelong story of perseverance in the midst of incredible hardship and pain.

By sharing Matt’s journey, our hope is that his struggles, pain and sheer courage will be Invisible No More and people will learn to look beyond our preconceptions. Let’s not judge others by they way they look on the outside. Instead, let’s give love to one another and find out what they have been through, what they need and who they are on the inside.

UPDATE 12/17/11 – Matt’s collection of poetry, A View from the Street, is now available online through his eStore.

UPDATE 10/8/2012 – Meet Matt in Person at the 2012 IDA Honor Awards Banquet!

Video of IDA Special Guest, Matt Barrett, Speaking at the Awards Banquet

ARTICLE RESOURCES

2011 Invisible Disabilities Association Honor Awards Banquet

Photographer Tells Matt’s Story

Tent City 3 (where Matt lived for three years)

ADDITIONAL RESOURCES

Order Matt Barrett’s Poetry Book, A View from the Street

Matt Barrett’s Website, A View from the Street

Ilona’s Photo Essay, Walking with Giant – One man’s battle with homelessness and debilitating illness.

Homeless in Seattle (an organization Matt supports)

About

Filed Under: IDA Events, Invisible Disabilities Assoc. Awareness Tagged With: awards, awareness, banquet, basal cell nevus syndrome, cancer, disability, event, homeless, illness, injury, inspiration, invisible disabilities, Matt Barrett, pain, personal story, speaker, spreading the word, support, video

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November Shines the Spotlight on Family Caregivers

November 1, 2011 by admin 4 Comments

Allsup promotes National Family Caregivers Month in November with free posters, caregiver brochures

Belleville, Ill. – Nov. 3, 2011 –More than 65 million parents, sons, daughters, spouses and others are family caregivers in the United States, but many of them remain anonymous, according to National Family Caregivers Association (NFCA). November is National Family Caregivers (NFC) Month and this year’s theme is “Identifying Family Caregivers.” Allsup, a nationwide Social Security Disability insurance (SSDI) representation company, is pleased to be an NFCA founding sponsor, and is offering free NFC Month posters and caregiver brochures to recognize America’s family caregivers.

According to NFCA, a key strategy to help identify family caregivers is to include questions about whether someone is, or has, a family caregiver on medical intake forms. “Without such information, the role of a family caregiver in the health and well-being of a person with a chronic condition is essentially negated,” said NFCA president and CEO Suzanne Mintz. “In some situations, it may be obvious that someone is or has a family caregiver, but if it isn’t in the record, it may not be taken into account when developing a care plan for both parties.” Mintz added that capturing caregiving information on official medical records can help ensure that caregivers’ roles, as well as their own health, receive more attention.

In an effort to better identify and understand caregivers with high burdens, NFCA and Allsup surveyed more than 1,500 NFCA members. The NFCA/Allsup Family Caregiver Survey provides insights on family caregivers’ needs, interests and concerns.

Among survey findings:

Nearly one-half (45 percent) have household incomes less than $40,000.
More than one-third (36 percent) care for a spouse or partner, and 42 percent care for a parent.
Nearly one in 10 (9 percent) of responding caregivers and about a quarter (27 percent) of their care recipients receive some type of disability insurance, with Social Security Disability Insurance being the primary type for both groups.
Nearly half (47 percent) of the responding caregivers were interested in getting help with Social Security disability claims.
Nearly two-thirds (60 percent) were interested in getting help with Medicare plan selection.

In honor of National Family Caregivers Month, Allsup is offering informational brochures on SSDI and Medicare, as well as a free gift to family caregivers during November. Anyone can access and order the brochures.

Caregivers [and patients] interested in learning if they or their care recipients may be eligible for Social Security Disability Insurance, or who would like a free Medicare needs screening, may go to Allsup.

Free NFC Month posters are available for download or ordering at , and clicking on “Request Materials.”

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ABOUT NFCA

National Family Caregivers Association educates, supports, empowers and speaks up for the more than 65 million Americans who care for loved ones with a chronic illness, disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers’ lives by removing barriers to health and well-being. For more information visit www.thefamilycaregiver.org.

ABOUT ALLSUP

Allsup is a nationwide provider of Social Security disability, Medicare and Medicare Secondary Payer compliance services for individuals, employers and insurance carriers. Founded in 1984, Allsup employs nearly 800 professionals who deliver specialized services supporting people with disabilities and seniors so they may lead lives that are as financially secure and as healthy as possible. The company is based in Belleville, Ill., near St. Louis. For more information and a Free Consultation visit Allsup.com. Be sure to mention you heard about them from IDA.

The information provided is not intended as a substitute for legal or other professional services. Legal or other expert assistance should be sought before making any decision that may affect your situation.

Above Allsup Press Release published with permission.

RELATED ARTICLES ON IDA

Allsup Applauds the Work of the Invisible Disabilities Association

Common Mistakes When Social Security is Denied

Living with Unlimited Purpose

November Shines the Spotlight on Family Caregivers

Pain and Social Security Disability Benefits

Six Advantages of Representation for SSDI

Social Security Disability Denial Rates

Spotlight Shines on Invisible Disabilities Champions

Tips on Social Security Eligibility

About

Filed Under: Living with Invisible Disabilities, Relationships Tagged With: awareness, caregivers, disability, family, helpful tips, illness, injury, invisible disabilities, pain, press release, social security

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Invisible No More: Teri Sluder

November 1, 2011 by admin 1 Comment

This video features the story of Teri Sluder, who lives with Myalgic Encephalomyelitis, hemialegic migraine, severe cognitive dysfunction and severe tachycardia. Teri is known as Justter on her YouTube Channel where she provides awareness and support to others.

Learn More About Invisible No More TV	Go to Invisible No More TV Channel
Join Invisible No More TV on Facebook	Submit Your Invisible No More Story
Order Invisible No More T-Shirts and More	Order Invisible No More Wristbands

About

Filed Under: Becoming Visible, Invisible No More, Personal Stories Tagged With: awareness, disability, illness, inspiration, invisible disabilities, Invisible No More!, loved ones, myalgic encephalomyelitis, pain, personal story, spreading the word, support, tachycardia

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Imagine with IDA Special Guest, Lori Frisher

About

Fearless: Service Dogs Offer Hope and Peace of Mind

About Sue Kindred

Invisible No More: Jodie Akers

About

Falling Off the Mountain of Trauma

About Angela Pierce

Photographer Uses Her Camera to Tell Matt’s Story

About

I Can’t Do This Anymore

About Kris Harty

Invisible No More: Milly

About

A Lifelong Journey with IDA Special Guest, Matt Barrett

About

Invisible No More: Teri Sluder

About

Invisible No More TV

Blog Table of Contents

NEW – IDA 3-LED KEYCHAIN FLASHLIGHT

Invisible No More! IDA Wristband

IDA Awareness

Just Because It’s Invisible