We interrupt the previously scheduled interview for a timely PSA...

Due to an overwhelming response to our interview with Alec Frazier, we're rescheduling Alec's replies for next Wednesday, September 10, 2014. 
In it's place, I'm sharing a guest post from someone my family has grown close to over the years with a timely PSA about a quiet cancer many don't often talk about. 
Miss Marmy, take it away...
September is Thyroid Cancer Awareness Month

One year ago, I was newly married, in a new state, walking into a doctors office for a first-time-patient physical. I breezed through my medical history, informing my new doctor that I had a thyroid disorder but had been taking a pill every day since I was a kid and was "fine". As far as I could tell, I didn't have symptoms. My levels were stable. Everything seemed fine. When she said she wanted to do an ultrasound, I remember looking at my husband and apologizing to him because he would have to take me to the hospital for this "pointless" scan which I felt would be a waste of our time. 

My fantastic husband, thankfully, values my health and it's upkeep more than I do. We followed doctors orders, sat and watched as the technician did her work, and there on the screen almost immediately we could see the thing, I would later realize, my life was being saved from. 

I found myself at the beginning of a journey that would ultimately lead me to face an enemy that had been biding it's time inside of me: one I never before knew to fear. 

They call thyroid cancer "the good cancer" because it's slow growing and typically not as externally terrifying. The go-to treatment is not usually chemotherapy. The prognosis is not usually one that sends you off with a number of days left to live and a bucket list to tackle. The mortality rate remains relatively low, yet the quality of life declines. About 62,980 new cases of thyroid cancer (47,790 in women, and 15,190 in men) will occur this year alone in the United States. That's 62,980 lives with plans and ambitions and loved ones, turned upside down, put on hold, battling to find the strength to overcome what will be a war waged internally for the rest of their lives. This cancer - this "good cancer" is a forever deal. It's that eerie feeling of being followed; the nagging knowing at the back of your mind that it can always come back to once again stop you in your tracks.

Now, I've been blessed. I've had the best of the best medical care and so far, certainly the best outcome we could hope for. My family and I are back on track, moving ahead, and enjoying a life free of my stupid, sick, cancer-corrupted, thyroid. I try not to dwell on the what-if's or what-could-be's, but I now have a scar that serves as a reminder of where I've been and where I could have ended up had someone not thought to check my neck.

My wish this Thyroid Cancer Awareness Month is that others learn from my experience and not shrug off that butterfly-shaped powerhouse inside of you. Pay attention to your body. There may be a lump you can feel, a persistent soreness to your throat, or your hormones might feel out of sorts. You might be fatigued, experiencing body aches, putting on or losing weight without effort, or maybe you've simply lost interest in the things you used to love. 

Perhaps, like I had been, you've been diagnosed with an imbalance, were put on a pill to correct it, and you've assumed all would always be well. I truly hope that you're right - and you very well could be - but regardless of your confidence in the matter, check your neck.

Early detection is key. If you're curious as to just how far this disease can go, I refer you to Esther Earl's story chronicled in This Star Won't Go Out. Thanks to her and the inspiration she provided to John Green for The Fault In Our Stars, thyroid cancer has been brought to the public's attention unlike ever before. I pray that it serves as the push anyone with this quiet destroyer present within them needs to find what's ailing them and fight it!

Questions for Alec, an interview with Alec Frazier

As you know, I reconstructed the blogger recently to make it easier for consumers who have disabilities  to connect with the goods and services they need. 

In building the site and re-editing my story, Impact, for publishing, I've encountered some really neat people. In the coming weeks, I'll be interviewing different individuals. Some are people with disabilities, others have designed exciting new products in the field of assistive technology, still others work in disability service in some capacity.

My first interviewee is my friend and fellow Team Impact member, Alec Frazier. Alec is a seasoned disability rights advocate who owns and operates the business, Autistic Reality http://www.nothingaboutuswithoutus.net/

Alec has a number of diagnoses, including Hip Displasia, Sensory Integration Disorder, Attention Deficit Disorder, Dysgraphia and Digital Atonia, Bipolar Disorder, Obsessive Compulsive Disorder (OCD) and Asperger's Syndrome. Feel free to ask any questions about these conditions. Alec will answer!

Alec is autistic and grew up in a progressive household with parents who refused to place him in a segregated educational setting and as a result was mainstreamed throughout his entire educational career.

Alec received his Associate’s from TC3, but has also taken classes at the University of Colorado at Boulder and Cornell. He is currently obtaining his B.A. in Political Science from the University at Buffalo as well as obtaining his M.A. in “Humanities - Interdisciplinary” with a formal Concentration in Disability Studies.

Alec works as a Community Advocate for WNY Independent Living Inc. (WNYIL), a Public Speaker and Advocate in Disability Rights Advocacy, a Student Advisory Council (SAC) Affiliate Liaison for the US Business Leadership Network (USBLN®), and does Public Relations for Visions Comic Art Group.

I have to admit, my knowledge of autism is rather vague and I'm quite interested in learning more. Sadly, when asked about autism, many of us think back to stories someone has told of a child, shut off from society and imprisoned in their own world, or we flash back to that Tom Cruise/ Dustin Hoffman movie, Rainman. I don't think either is a realistic picture of autism.

In my story, Impact, I try to dispel myths about disability. It's my hope, that by interviewing Alec, we can become more aware of autism.

Alec has offered a frank discussion about his life with autism and has invited our questions.

I have a number of my own questions. Is there something you've always wanted to know about autism, but were afraid to ask?

Do you know someone with autism? Do you have questions about accessing services for someone who is autistic?

Do you have questions about independent living?

Please post your questions in my facebook community. https://www.facebook.com/dacharlesauthor

The interview will post the following Wednesday, September 4, 2014 right here.

We will accept questions until 8/30.


~nise

A sad farewell...

I had planned to write today, but it's been difficult to get my mind off the loss of one of America's most beloved funny men, Robin Williams. It's hard for me to remember a time when he wasn't a part of our lives. My house didn't have cable growing up, so our exposure to mainstream entertainment was minimal, but I remember fondly spending evenings at my grandmother's house in front of the TV watching such classics as Happy Days, Laverne and Shirley and of course, Mork and Mindy. My exposure to comedy was limited to more mature entertainers like Jack Benny, George Burns, and Uncle Miltie. Robin Williams and his youthful brand of funny was something I could relate to and embrace.

Through the years I've enjoyed the wit and humor of this talented entertainer and it saddens me beyond words to learn that he's gone.

Often when one passes far too soon, as Robin has, we see an outpouring of love towards the family, with fond remembrances of the person who has passed. It's encouraging to see, with Robin's death, an outpouring of love towards all of humankind-compassionate messages of encouragement, support and solidarity for individuals who battle depression on a daily basis; so while Robin's death is a terrible, tragic loss, perhaps from it we'll learn to be more understanding and compassionate towards those who struggle daily with an invisible condition many of us cannot comprehend.

I think it's hard for many to reconcile Robin's battle with depression and his public persona, but I think fellow comedian, Josh Sundquist, best summed it up.

"How could someone so funny commit suicide?

But that's the thing about comedy. It frequently grows out of deep personal pain.

To the audience, comedy appears to be a sign of internal joy, overflowing happiness that bubbles over into jokes.

But for the comic, it’s often simply a way to deal with the pain. An outward expression of inner demons." -Josh Sundquist, August 11, 2014

Depression is an invisible illness, often shrouded in secrecy. We don't want to talk about it and many who live with it hide it well. Because of this, many people who have not personally experienced depression have difficulty recognizing it as a real disorder. I think Robin's death has been a much needed wake-up call to us all, shining a light on a subject many people don't understand.

By not validating someone's depression and by treating it like something that can be turned on and off at will exacerbates the situation. Seemingly innocuous comments are hurtful and can often send someone dealing with depression into a tailspin, so please, use your words carefully and be considerate to others. A compassionate gesture can save a life. Be nice, everyone is fighting a battle you know nothing about...

Rest easy, Robin. You’ll be sorely missed.

What is Independent Living?

What is Independent Living?

What is Independent Living?

Most Americans take for granted opportunities they have -- regarding living arrangements, employment situations, means of transportation, social and recreational activities, and other aspects of everyday life. For many Americans with disabilities, however, barriers in their communities take away or severely limit their choices. These barriers may be obvious, such as lack of ramped entrances for people who use wheelchairs, lack of interpreters or captioning for people with hearing impairments, lack of Braille or taped copies of printed material for people who have visual impairments. Other barriers -- frequently less obvious -- can be even more limiting to efforts on the part of people with disabilities to live independently, and they result from people's misunderstandings and prejudices about disability. These barriers result in low expectations about things people with disabilities can achieve. So, people with disabilities not only have to deal with the effects of their disabling conditions, but they also have to deal with both kinds of barriers. Otherwise, they are likely to be limited to a life of dependency and low personal satisfaction. This need not occur. Millions of people all over America who experience disabilities have established lives of independence. They fulfill all kinds of roles in their communities, from employers and employees to marriage partners to parents to students to athletes to politicians to taxpayers -- an unlimited list. In most cases, the barriers they face haven't been removed, but these individuals have been successful in overcoming, or at least dealing with them.

A Definition of Independent Living

What is independent living? Essentially, it is living just like everyone else -- having opportunities to make decisions that affect one's life, able to pursue activities of one's own choosing -- limited only in the same ways that one's non-disabled neighbors are limited. Independent living should not only be defined in terms of living on one's own, being employed in a job fitting one's capabilities and interests, or having an active social life. These are only a few aspects of living independently. Independent living has to do with self-determination. It is having the right and the opportunity to pursue a course of action. And, it is having the freedom to fail -- and to learn from one's failures, just as non-disabled people do. 

There are, of course, individuals who have certain mental impairments which may affect their abilities to make complicated decisions or pursue complex activities. For these individuals, independent living means having every opportunity to be as self-sufficient as possible.

Independent living isn't easy, and it can be risky. Millions of people with disabilities rate it higher than a life of dependency and narrow opportunities and unfulfilled expectations. Self-determination is having the right and the opportunity to pursue any course of action. It is being free to fail and to learn from those failures, in the same way as people without disabilities.

Independent Living Centers

Fortunately, people with disabilities don't have to do it all on their own. Independent Living Centers are a kind of service organization which is designed specifically to assist people with disabilities in achieving and maintaining independent lifestyles. These organizations, called independent living centers, are extraordinary: they are run by people with disabilities who themselves have been successful in establishing independent lives. These people have both training and the personal experience to know exactly what is needed to live independently and, they have a deep commitment to assisting other disabled people in becoming more independent.

Services of Independent Living Centers

Centers offer a wide variety of services. Four are essential to efforts of people with disabilities to live independently:

A. Information and Referral

Centers maintain comprehensive information files on availability in their communities of accessible housing, transportation, employment opportunities, rosters of persons available to serve as personal care attendants, interpreters for hearing impaired people, or readers for visually impaired people, and many other services.

B. Independent Living Skills Training

Centers provide training courses to help people with disabilities gain skills that will enable them to live more independently; courses may include using various public transportation systems, managing a personal budget, dealing with insensitive and discriminatory behavior by members of the general public, and many other subjects.

C. Peer Counseling

Centers offer a service in which a person with a disability can work with other persons who have disabilities can work with other persons who have disabilities and who are living independently in the community. The objective is to explore options and to solve problems that sometimes occur for people with disabilities, for example, making adjustments to a newly acquired disability, experiencing changes in living arrangements, or learning to use community services more effectively.

D. Advocacy

Centers provide two kinds of advocacy:
1. Consumer advocacy, which involves center staff working with persons with disabilities to obtain necessary support services from other agencies in the community.
2. Community advocacy, which involves center staff, board members, and volunteers initiating activities to make changes in the community that make it easier for all persons with disabilities to live more independently. 3. Other Services Centers also offer a number of other services, generally depending on specific needs of their consumers and lack of availability elsewhere in the community. Among the most frequently provided services are community education and other public information services, equipment repair, recreational activities, and home modifications.

How Independent Living Centers Differ from Other Service Organizations

There are many different types of organizations which serve people with disabilities -- state vocational rehabilitation agencies, group homes, rehabilitation hospitals, sheltered workshops, nursing homes, senior centers, home health care agencies, and so forth. These organizations provide valuable services and are important links in the network of services that help people with disabilities maintain independent lifestyles. What makes independent living centers very different from these other organizations is that centers have substantial involvement of people with disabilities making policy decisions and delivering services. Why this emphasis on control by people with disabilities? The basic idea behind the independent living is that the ones who know best what services people with disabilities need in order to live independently are disabled people themselves.

The Independent Living Movement

In the late 1960s and the early 1970s, this idea led people with disabilities from around the country to take active roles on local, state, and national levels in shaping decisions on issues affecting their lives. A major part of these activities involved formation of community-based groups of people with different types of disabilities who worked together to identify barriers and gaps in service delivery. To address barriers, action plans were developed to educate the community and to influence policymakers at all levels to change regulations and to introduce barrier-removing legislation. To address gaps in services, a new method of service delivery was conceived -- one which has people with disabilities determining kinds of services essential to living independently, has people with disabilities directing the deliver of these services, and has people with disabilities actually providing these services. The earliest center was formed in 1972 in Berkeley, California soon followed that same year by centers in Boston, MA and Houston, TX. In 1978, following effective advocacy by people with disabilities and their supporters all over the country, federal legislation was passed that provided funding to establish independent living centers (Title VII of the Rehabilitation Act). Today, there are centers in virtually every State and U.S. territory.

The Role of People with Disabilities in Centers

These centers can be easily distinguished from other service agencies by the extent of involvement of people with disabilities. Independent living centers have a majority of people with disabilities on their governing boards, and they hire qualified people with disabilities to fill management and service delivery positions.

Disability Groups Served by Centers

Centers typically serve a wide variety of disability groups, including people with mobility impairments -- which may be caused by spinal cord injury, amputation, neuromuscular disease, Cerebral Palsy, and so forth -- as well as people who have visual impairments, hearing impairments, mental retardation, mental illness, traumatic brain injury, and many other disability groups. The extent to which a center serves a given disability group will vary widely from center to center, dependent very much on availability and quality of services from other community service organizations, the financial resources of a center, and extent to which representatives of that disability group have chosen to be involved in the center. People running independent living centers believe very strongly that prior to initiating services to a disability group, efforts should be made to recruit representatives of that group to serve in board, staff, and advisory roles. In this way, the people who are to benefit from the services have a say in designing and delivering the services.

How to find Independent Living Centers

If you are interested in locating the center nearest you, there are several approaches you might try:
A. Search on-line for Independent Living Centers in Pennsylvania
B. Look in your local telephone directory under social services. Try both the regular directory and the yellow pages.
C. Contact the main office of the State Vocational Rehabilitation Agency (your local public librarian should be able to help you obtain its address and telephone number) and request that the person responsible for overseeing the agency's independent living program provide you with information on centers in your state.
D. You may also contact the Rehabilitation Services Administration's Office of Independent Living (330 C Street, S.W., Switzer Bldg., Washington, D.C., 20202, 202-732-1400). Staff members will have a listing of the approximately 150 centers it funds. In addition, you may wish to contact us at ILRU. We maintain a comprehensive directory of over 350 programs providing independent living services. This directory is available for $8.50. For persons interested in locating programs in a specific area, individualized searches can be made using the ILRU National Database on Independent Living Programs.

A Final Word on Independent Living

Changes that make life more satisfying don't occur overnight. For people who are willing to work toward greater independence, independent living centers can help put the pieces together.

About this Publication This publication was developed by the ILRU Research and Training Center on Independent Livingof Houston as part of its National Technical Assistance Project for Independent Living. It was written by Laurel Richards and Quentin Smith. ILRU is a national center for information, research, training, and technical assistance for independent living. One of its purposes is to improve the spread and utilization of results of research and demonstration projects in the field of independent living. The ILRU Research and Training Center of Independent Living is sponsored by NIDRR (National Institute on Disability and Rehabilitation Research), U.S. Department of Education. The content of this publication is the responsibility of ILRU, and no official endorsement by the Department of Education should be inferred.

For additional copies of this publication or for more information, contact: ILRU 3233 Weslayan, Suite 100 Houston, TX 77027 Voice: 713-960-9961 TDD: 713-960-0145

ILRU Field Work Staff A National Technical Assistance Project For Independent Living 
Laurie Gerken Director of Technical Assistance
Shirley Herzog Administrative Assistant
Laurel Richards Director of Training
Renna Brown Administrative Secretary
Margaret A. Nosek, Ph.D. Director of Research
Rose Shepard Materials Distribution Supervisor

Smiling thanks to Amazon.com

Did you know... When you add the prefix smile. before amazon.com in your browser, a portion of what you spend is donated to a charity of your choice by Amazon? ...and the best part is that it doesn't cost you anything extra. As lovers of books, we could make a huge impact just by typing those six extra characters. Many of us use Amazon for a number of other purchases as well. So remember... www.smile.amazon.com I chose St. Jude Children's Research Hospital. Who will you choose?

Down Syndrome Awareness

 

From Justlikeyoufilms.org a short film on Down Syndrome awareness.
What is Down Syndrome?

MiCASSA Legislation

In  my writing, I've referred to a grass roots group of advocates- ADAPT. ADAPT is comprised of individuals with disabilities and the people who care about them. Their members commit acts of civil disobedience to raise awareness and bring about change.

One such instance was the MiCASSA Legislation, penned in Georgia between ADAPT and Newt Gingrich.

An incredible account of this event, which occurred in November, 1996 can be found in a former article of New Mobility magazine.

http://www.newmobility.com/articleView.cfm?id=362

Sadly, patients continue to be neglected and abused in institutions every single day. Fred Savage starred in a fact based movie about Mike Mills, a young man with Muscular Dystrophy. “When you Remember Me” is a story that will shake you to your core. I promise.

While it is not my intention to upset anyone in the nursing home industry, I prescribe to the belief that community-based care is an alternative to long term care facilities that has been under-utilized and under funded for far too long. It may not be appropriate for every individual to live within the community in their own home, but personal experience has proven to me that individuals who receive home and community based care funding are healthier and happier than individuals who live within a long term care facility.