MY VOICE: Education on disabilities

By Michelle Osterberg


Q. Tell us what type of disability that impacts your life.

A. The disability that impacts my life is ataxia. People with ataxia have problems with coordination because parts of the nervous system that control movement and balance are affected. Ataxia may affect the fingers, hands, arms, legs, body, speech, and eye movements. I have had ataxia for about 5 years now and it was life changing.

Q. Tell us about a time when you felt empowered.

A. For the first two years I was down, depressed, didn’t want to do anything at all. One day though, I decided to take charge of my life and I learned how to cope with it.


Q. If you could change one thing that all public spaces had to change to make life easier what would it be and why?

A. I would make businesses have more accessible bathrooms and parking lots. There are times in which I have to wait a long time to use the restroom because a lot of people that do not have a disability go and use those restrooms and makes it hard for us that do because there is only one accessible bathroom. My husband had a situation where a guy did not have a placard and parked in the accessible parking while we had been waiting to park there.

Q. Tell us one thing you want people to understand about living with a disability, or being a caregiver for someone with a disability.

A. I want people to understand that just because I have a disability does not mean I am not human. I just have to live life differently and do things differently.

Q. What can society do today to stop discrimination against those with disabilities?

A. I think that society should learn what ataxia is and what it does. I believe that doctors should promote it more and let people know. Ataxia is a rare condition and not many people have heard about it or know much about it.



I want to thank Foundation for giving me the BalanceWear Vest and giving me a new chance to get part of my life back. It makes me want to cry that you guys were able to help me. Thank you very much.


MY VOICE: Second Chance

Guest Blogger: Daniel Vanover

Q.What is your name?

A. My name is Daniel Vanover

Q. Tell us what type of disability impacts your life or the life of a loved one.

A. During my time in the military, I had a traumatic brain injury that nearly claimed my life. After being medically discharged, I had continued affects that would follow me for the rest of my life, called post concussive syndrome. Things such as headaches, dizziness, fatigue, and memory loss had become my everyday routine. Not only did it affect my life and well-being, but it also affected my family’s life. Four years later, I suddenly found myself in a similar situation that nearly took my life, again. While working on the wall in my backyard, the top brick that I had been on suddenly cracked, launching me downwards onto the concrete. As I am sinking farther and farther down to Earth, I notice that I was falling backwards and my body did anything it could to keep from falling and hitting my head. I managed to get my hands down before striking the concrete, thus fracturing both of my wrists and breaking off pieces of small bones in my left hand that then sliced and severed every major nerve that runs to my hand. As I lay with both of my wrists fractured, I try and stand up but notice immediately that I had fractured my back also.


Q. Tell us about a time when you felt empowered.

A. When I was in the military, I loved it. It had been my dream since I was a small boy to travel the world and experience things that people couldn’t imagine. When I put on my uniform every morning, I felt I had a purpose. My job was to protect those who were unable to protect themselves and I felt that I had finally found my place in this world. That was, until my accident happened. Because of the secret things we do, I am unable to go in to detail about what happened, but I knew when I woke up in the hospital that my life would change forever. When I got the news that I was unable to do my job because of the injury, my heart sunk. I felt lost. I felt that everything I did in life was to get me into the military and now that I had to leave, I didn’t know what else I could do. The military was my life and it was the only thing I had ever known and to leave that was completely devastating. The moment I left, I was on my death bed. I weighed under 130 pounds and was vomiting every morning, unable to eat due to the intense migraine pain and blurry vision that made my head feel like it was in a blender. I was hopeless and without anyone to help me, I felt completely lost. It was not until one day when I told myself, no more. I would not live my life like this or accept my fate. I started to exercise more, eat better, and started to self-medicate to double check everything that I had been putting into my body. I wanted to change my life and knew that no one would do it for me and if I wanted a change, it had to come from me. This is the first time I had really ever had to make a change because my life depended on it. I was able to overcome my disabilities and become a strong, smart, dedicated and successful man that I had been years before in the military. That was until life decided to test me again on December 19, 2016.  Nothing could prepare me for what was about to happen. I fell 12 feet down from a brick wall that I had been working on and one of the bricks cracked and launched me to what seemed to be my death. Seconds seemed like hours and minutes seemed even longer. As I lay there screaming for help, no one comes. I reach in my pockets to grab my phone to call for help and find that the bones in my wrists have been severed and dangling as if I was a Marionette. As I start to feel myself fade in and out of consciousness, I look over to see these two young men hop over the fence and rush to my aid. I was so surprised that someone had found me that I started to smile and laugh. At this point, these guys think I am literally insane, but I couldn’t help it. My screams for help had finally been heard, 20 minutes later in fact. As I am rushed to the trauma center of the ER, I am surrounded by doctors and nurses who are frantically trying to piece me together and I smile and greet each doctor as they are frantically trying to keep me from going into shock. The doctor sees me and asks why I am smiling. I simply say, “I thought I was dead, I had given up after about 10 minutes of continuous screaming with to no avail and accepted my fate. Everything now is just a blessing.” Four months, three surgeries, two plates, and 14 pins later, I was able to finish my physical rehabilitation and decided to dedicate my life to helping others who seem to scream and shout for help but no one hears. I was very lucky to not be paralyzed or even die because of how far and how hard I fell. I was fortunate enough to be able to have doctors basically put me back together in one piece and not being permanently handicapped or even dead was a miracle. I felt that from that day forward, I was given not a second chance, but a third. And I would use that third chance at life to help others who don’t have a voice and who continue to scream without a hero to come and save their life, just like one did for me.


Q. Tell us if you could change one thing that all public spaces had to change to make life easier what would it be and why?

A. One thing that I wish I could change would be the public mindset of people with disabilities and to just follow the rules and regulations that are established from the ADA. These rules are not made for fun, they are made so that others with disabilities can have a great life and do everything that normal people can, we just need more help. Little things such as parking spaces, extended opening doors, and ramps for us to get in to an establishment easier may seem like small things to some, but to us these things are the key for us to be successful.

Q. Tell us one thing you want people to understand about living with a disability, or being a caregiver for someone with a disability?

A. One thing I would like for people to understand about living with a disability is that patience is key. My accident happened within a span of 10 seconds and I was on the ground with a broken body that would take a lifetime to heal. Before my injury, I was a very strong bodybuilder. I went to the gym every day and was training for my first competition during the times of the fall. Months after, I am unable to lift as much as before and still can barely move my left wrist without pain. My life will be forever changed from a small 10 second incident. As of today, I take my time moving around, getting my things together, using the restroom, and even sometimes I am unable to work for the entire day because my body just can’t handle it. All that I would like people to take away from others suffering with disabilities is to please, just give us your patience, not your pity.


Q. Tell us what can society do today to stop discrimination against those with disabilities?

A. One thing society can do to stop discrimination against those with disabilities is to get educated about people with disabilities. If you were to just stop and ask someone how they are feeling and what could help them or what would make life easier for them, we would all be in agreeance that we don’t want to ask for anything more than what we need to have to be normal. We are just like every other person but we just need time and patience to work with. We have been unlucky in life with what happened to us, but we don’t want to be counted out, we just want a fair shot at the world again. That’s why it is so important for organizations like that go and make sure the world is fair and equal for people with disabilities because they are the voice that they cannot or do not have.

MY VOICE: Disabilities come in all shapes and sizes

By: Juli Newman

Q. Tell us what is the type of disability that impacts your life, or the life of a loved one?

A. My daughter had a stroke sometime around her birth.

Brooklyn photo

Q. Tell us if you could change one thing that all public spaces had to change to make life easier what would it be and why?

A. I think our biggest struggle has been being able to find resources to help us help her. We don’t always know where to go because her disability is so mild in comparison to many others. She tends to fall through the cracks of the system. It would be nice for people to recognize and help these kids before they get so far behind. Especially in the school settings.

 Q. What is one thing you want people to understand about living with a disability, or being a caregiver for someone with a disability.

brooklyn walkaide photo


I just because someone doesn’t have a severe disability, doesn’t mean they don’t have a disability. It’s hard when I have this child who appears perfectly “normal” to an outside observer, but she has difficulties that arise from having her stroke. When people see her wearing headphones in noisy settings or throwing a tantrum due to sensory overload, they think “I am babying her or I don’t discipline her.” Disabilities come in all different shapes and sizes, just like people. It’s not our place to judge how we think someone else should be parenting-especially when we don’t know their circumstances.

 Q. Tell us what can society do today to stop discrimination against those with a disability?

A. I think stop staring! Don’t judge and assume, just ask. Most people are more than willing to explain “what happened” or why they are different. But pretending they aren’t there or ignoring them because they wear a brace or use a wheelchair or can’t stand up completely straight, doesn’t mean they don’t have feelings.



MY VOICE: Stroke survivor regains her independence

32 Guest Blogger: Stephanie Wilderman

Q. What is your name?

A. My name is Stephanie Wildeman. My mother is Sandra Kniffin.



Q. Tell us what type of disability impacts your life, or the life of a loved one.

A. My mother had a stroke and lost use of her left arm and left leg.


Q. Tell us about a time when you felt empowered.

A. My mother felt empowered when Foundation gifted her the electric scooter. The first day she received it she went out around the neighborhood was saying “hi” to everyone and just felt free. She’s able to get around now.

Q. If you could change one thing that all public spaces had to change to make life easier what would it be and why?

A. I say that all restaurants should have enough accessible parking. The tables should have room for someone with a wheelchair to sit, the aisles should be wide enough, the bathrooms should be accessible and have a few of them and not just one. They should also have wider entrances and exits. A lot of the doctor’s offices should also be accessible; I find it hard when I take my mother to her appointments because sometimes there is not enough room to get around.

Q. Tell us one thing you want people to understand about living with a disability, or being a caregiver for someone with a disability.

A. I want people to understand that it takes patience. People assume that us as caregivers have everything under control but at times that is not true, it is very overwhelming. People with disabilities need constant caretaking. We as caregivers are also individuals. Yes, we are caretakers but we also are like everyone else.



Q. Tell us what can society do today to stop discrimination against those with disabilities?

A. Businesses should take in mind that people who have a disability want to be normal. They want to be like everyone else. Yes, they have to do things differently but they are still human. We want to be able to go into your business and enjoy our time with our families, be able to not worry about being discriminated because a table, counter, entrance or bathroom isn’t accessible.


MY VOICE: Letting him learn

Letting him learn

Guest Blogger: Stacey Gagnon


It’s painful isn’t it? I feel your gaze and from the corner of my eye I see that your facial expression matches what I feel inside every single time. I see the fear as you watch and I cannot reassure you that he won’t fall and that there won’t be tears. I see you look at me and I bet I look indifferent. I’m sitting holding my phone seemingly engrossed in the latest Facebook drama and unaware to what is playing out before us.  I’m not. I am absolutely gripped by fear because I know he very well may fall. I know that this is so hard for him. I know every single thought you are thinking, but I must pretend I’m not even noticing. I must become hardened to the falls and the failed attempts. Yes, my child must fall before he can soar. It has become my job to sit back and watch my five-year-old sweat great drops as he hauls his non-working legs up a flight of stairs. I must look away as he tests his limits. I have to pretend and say “yes, you can climb up into that chair by yourself” while inside I can’t figure out how he would possibly have the physical strength. And when you stand up to catch him or to help him, I will suddenly be available. Not available to help him through this task, but to stop you. Yes, it is not easy to see my son work so hard, or fall so far, but if you help him he will become reliant on that help. He will learn to be handicapped by his mind, not his body. I must do this because if I don’t, I have disabled my son. Fear and helplessness will paralyze him more than being in a wheelchair.


Last week I made the mistake of limiting my son in an effort to protect him from failure. We were at the doctor’s office and he wanted to climb from his wheelchair up onto the exam table. I told him no, and lifted him up onto the table myself. After the doctor left, and I had transferred him back to his chair, he pointed to the table and said “Israel, do it”. I started to tell him no, because in my mind it was impossible and he would just fall. But I stopped at the look of sheer determination on his face and let him try. With pure grit and strength, he grabbed the plastic top of the exam table and began to pull himself off his wheelchair up the side of the table. Halfway up, he was dangling and in my mind we had reached the point I was going to catch him mid-fall and place him back in his chair. My hand poised under his backside, but I didn’t touch him. I quietly said. “you can do it”. I waited several endless seconds and with a burst of strength he dead lifted his body the rest of the way up and into a sitting position. I was completely stunned. My child had just transferred from a child’s wheelchair onto an adult exam table, without handholds or assistance.  He just looked at me, grinned and in his emergent English said, “Israel, do it!”


Israel was born with thoracic level spina bifida, which means he has no feeling from the upper waist down. Placed at birth in an orphanage, he was deprived of everything but the basics to live.  He had all kinds of medical issues listed, many I had never even heard of. He was listed as a child that would never run, never dance, never walk. A child that would not be able to use the restroom on his own. A boy that was never what I imagined in a son. We picked a child with a diagnosis that would devastate parents. But the reality is this, we did not pick out a child with a true impairment. We did not pick up a child from an orphanage in Eastern Europe that was handicapped in any way that truly mattered. We have chosen a child whose heart beats with love and kindness. We have picked a child whose internal qualities outshine any physical impairment he has. A boy that fights for independence and freedom. We have found a child that was bound by his disability in an orphanage, but when given a family and equipment, has absolutely soared. Israel’s determination is like nothing I have ever experienced. Tasks and activities that seem impossible, he conquers. He has not backed down from the hard things and in the five months he has been home, can climb stairs, pop wheelies in his wheelchair and transfer from the floor into his wheelchair unassisted. Every mountain that seems insurmountable is attempted with a face of determination and strength. And as his mother, I’m the one learning to let him try things that seem too hard. In the orphanage he had to fight for every scrap of worth and independence. The very things that seem so devastating about his life, have actually shaped him into an incredible child. I’m the one that has had to learn to get out of his way. And it seems ironic that I once feared how he might hold our family back in going places and doing things. Seems like the opposite has occurred, and Israel has taught us not to let things hold us back. He has completely changed our parenting.


So, I ask that when you see my son struggle and I appear cold and indifferent, do not look at me and cringe with judgement. Please look my way and smile. Silently share my fear, and encourage me. Because I am raising a man. A man who needs to fall before he can soar. A man whose character and strength will run deep in his veins and will be obtained through scars, falls and trials. I am raising a man that will get back up, again and again because his mama said he could. And if you ask me why I am not helping him, I will simply answer, “I am”.


**Editor Note – We asked Stacy if she could describe the challenges of public accommodation barriers, here is her response….


“The biggest challenge we have is the lack of parks, restaurants and stores that are ADA compliant. When we walk in a store with narrow aisles or displays in the middle of the aisle, it is very difficult, if not impossible to navigate. We are learning which places we can frequent, and what would be impossible. Right now, Israel is carried in places like this, and he doesn’t like it.  It takes away the freedom that his wheelchair provides. When we can’t allow him to utilize his wheelchair, we are essentially taking away his legs. This holds true for parks and restaurants. We find that we are very limited living in a rural area, and our son needs ADA compliance in order to be mobile.”


Stacey Gagnon



MY Voice: Perspective from an AID Foundation Guest Blogger

By Michelle DeCiantis

Q. Te12548896_609043119259353_1372594939655724438_nll us what type of disability impacts your life.

A. The type of disability that impacts my life is SPINAL CEREBELLAR ATAXIA.

Q. Tell us about a time when you felt empowered.

A. I felt empowered the day I graduated from nursing school.


Q. Tell us if you could change one thing that all public spaces had to change to make life easier what would it be and why?

A. I would like to see all public buildings have operational handicap automatic door buttons. Maneuvering in out around public places is difficult enough in a wheelchair but struggling to enter and exit because the doors are difficult heavy awkward to open or non-functional makes it harder.

Q. Tell us one thing you want people to understand about living with a disability, or being a caregiver for someone with a disability.

A. One thing I would like people to understand is that I don’t always want or need help however walking over in front of cutting me off or ignoring me shows a lack of wanting to get to know me and a lack of respect.



Q. Tell us what can society do today to stop discrimination against those with disabilities?

A. I think the public can help by first understanding a disability can occur to anyone at any time so think about if it was a family member or a loved one of these errors and then and help us go to Congress write letters or get messages to State and local local establishments or you know to the federal establishments in let them know that there’s a problem with parking with being able to enter and exit the building with trying to get up to upper and lower levels because they don’t have rent and or the elevators are broken cannot park in handicap parking spot just because someone you know has a handicap sticker and it’s more convenient for you.


Thank you AID Foundation so much for contacting me and for all of the hard work you do.




My VOICE: Difference between being a Mother and a Caregiver

Q. What is your name?
A. I am Shannon Puckett

Q. What is the disability that impacts your life, or the life of a loved one.

A. Mother of 8, 4 with complex special medical needs. Honorary PHD’s in Cerebral Palsy, Epilepsy, Autism, vision impairments, respiratory complications, hearing loss and juggling. Currently studying for hypothetical 0426161910adegrees in Spina Bifida and Hydrocephalous.

Q. Tell us about a time when you felt empowered.
A. When we first began our family, I never imagined the journey God had in store for us. If you would have shown me a glimpse of me now, back then, I’m positive I would have freaked out. When our daughter Aly was first diagnosed with epilepsy and CP, I barely knew what either of those terms meant. Let alone, what the full depth of those diagnoses implied. I did know that my lack of knowledge scared me and was not benefiting my daughter. I instantly became the type of parent all doctors hate! The parent with a thousand questions, who keeps asking the same question over and over and over again, until fully understanding. Yes, I would like a power point, yes, I would like for you to break it down, yes, I do have all day even if you don’t. No, you may not leave this tiny little room until I fully comprehend what an EEG is and how every single lead works and why each one is placed exactly where it is placed, and yes I want you to show me how to read the results! I took a few years for the doctors to cave to my endless bombardment of questioning. I am convinced that the schedulers actually schedule our appointments for a longer block of time than usual when they hear my name, knowing my reputation. And I am ok with that. All my educational harassment has paid off. My husband and I are our daughters first line of defense. We are their A team. And the more we know about their diagnosis, the better we can care for them and help those that are part of their care team. In the last few years, I have received several compliments from members of our daughters care teams, in regards to our level of knowledge in all things related to their care. At appointments and during ICU stays I feel like we are considered as more than just “mom and dad”. I know that our daughters care teams acknowledge our years of experience and value our input. Knowledge of our daughters diagnosis, treatments and care have empowered us to provide them with the best care we could possibly offer them.
Q. If you could change one thing that all public spaces had to change to make life easier what would it be and why?
A. Over the years we have never really dealt with a lot of public access problems or discrimination. Our daughters are still young, and for the most part their wheelchairs are very stroller-like. We have a large family which actually complicates our outings more than our daughters disabilities most days. But the one issue that we do have on a regular bases, is finding a handicap parking space. I know this is common for all of us, there are never enough. We currently have two in wheelchairs, and will soon have a third. This makes loading and unloading “fun”. So when there are no van accessible handicap spaces available, we usually have to park way in the back of the lot, in order to have access to unload. Often times, we still come back out to our van to see that someone has parked right beside us, and we have to move the van just to load back up. And in AZ, in the summer, this just triples the fun factor! I’m sure many of you can relate. I would love to see a percentage of handicap spaces reserved for vehicles that were for those only utilizing wheelchairs. I know this may offend some of those within the disability community. It’s kinda the giant white elephant in the room. It touches on the fact that maybe some use and abuse handicap parking privileges. While often there are others with perfectly legit placards that may appear to not need them. I know that applying this policy would imply that certain disabilities might be more important than another, But the fact of the matter is simple. When there are no handicap spaces available, an ambulatory person looks for the next closest space, whereas a wheelchair person is left to find a space that will allow for space to unload their chair. Limiting the use of certain handicap spaces to wheelchair patrons only, would increase availability to them, making parking in general less of a hassle.
Q. Tell us one thing you want people to understand about living with a disability, or being a caregiver for someone with a disability.
A. Caring for our daughters has changed many aspects of our lives. We know the inside of the children’s hospital better than our own home. We can change a g-tube, deep suction and perform respiratory therapy treatments as well as any trained nurse. Our lives revolve around doctors, therapies and insurance claims. I spend half my life on the phone making appointments. But, none of that changes the fact that I’m still a “normal” mom. I chase toddlers, make school lunches, hide in the bathroom and pretend mount-laundry does not exist. I have good days and bad days. Only, sometimes my bad days involve disputing liabilities and coverage. But, there is still a me behind the awesomeness that IS my daughters advocate. Sometimes, I feel like as caregivers we are seen as an extension of our children. We do so much for our children that it is easy to forget that we are a whole separate person. I have hobbies and interest that have nothing to do with yelling at insurance agents or waiting on hold. I love meeting up with other moms for moms night out or play dates at the splash pad! Yes, we are busy, and yes, I may have to schedule a month out to make plans with you, BUT please don’t count me out just because I am a caregiver. Caregivers are more than just the person they care for and we love to spend time with others and be invited out for coffee and hang outs.
Q. Tell us what society can do today to stop discrimination against those with disabilities?
A. Today society is doing more than ever to include those with disabilities. There are dolls with disabilities, multiple special needs paraprofessional sports, even athletes crossing over to mainstream athletics with disabilities. Schools are doing better at teaching inclusion and offering alternative options for students with disabilities when needed. While great progress has been made, we still have a long way to go. But, we need to be careful that in our journey to educate society about those within the disabilities community, we do not create a stigma that people with disabilities “need” society to constantly put them up on a platform of inclusion. Only when society can look at an individual in a wheelchair, or a person with a prosthetic leg, downs syndrome, ect, and see the person and not the disability, will we have reached full inclusion. And if we consistently tell society that those with disabilities need more, must be offered different, or events changed entirely to include them, society will continue to only see the need and not the person. We must fight for inclusion in a way that advocates for the person and not the disability. I know this is easier said than done, and it is a very fine line. One that if we do not keep an eye on, will ultimately do more harm than good to the disability community.
Aly in her new sleep safe bed