Category: Accessibility fo all

Patrick Mayer – Wheelblades

Post author By Fred
Post date February 22, 2022
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A handicapped man on a wheelchair in the snow

Patrick Mayer, Creator of Wheelblades

“I decided to continue with my life and try to make the best of it”

hen Patrick was nine years old, he already knew he wanted to be a professional snowboarder. His passion was freestyle snowboarding. At 17, he went to Tübingen (Germany) to attend a boarding school for sports in the Swiss mountains. His aptitude for the sport quickly elevated him to the elite of German freestyle snowboarding. In 2000, during a competition, he crashed, injuring his back. Emergency surgery quickly followed. The resulting diagnosis: he would need a wheelchair and walking aids for the rest of his life.

His life changed on that day, but giving up was not an option. At 21, life was too valuable to surrender to fate without a fight so, he accepted the challenge life presented him and made a decision to live a full life.

Patrick is now the owner of “Nicon-Tec Ltd”, a company that develops and produces innovative products for people with walking disabilities, giving them the ability to navigate any surface, in any situation. Patrick believes the concept of inclusion should not be limited to urban life only but that it should also include the outdoors and being able to enjoy nature. He observed that there were few creative, inexpensive aids. From this his idea was born – use the advancements in the technical space to gradually improve the world of the handicapped.

PATRICK SHARED SOME INSIGHTS WITH MÉLANGE

Three months after my accident, I thought about the options that I had and I asked myself: “what do I now want from life?” I decided there were only three options for me:
#One: Suicide. Escape my inevitable situation
#Two: Continue my life in bitterness, . . . because I could not at that time accept what had happened.
#Three: Continue my life and try to make the best out of it. Accept what has happened.
I concluded that in order to live a happy life I had to choose option three. Option number one was no longer an option at all, and option number two was the same – no option! For me, a life in bitterness was like a very slow suicide. Every single happy moment will drown in bitterness. Where is the fun? The quality and joy of life? So, I chose option three which means drawing a line and starting from zero, if not for myself at that time, but I had to do it for my loved ones. In Germany we say “Du erntest was du säst” which means “you reap (harvest) what you sow.” If you give happiness, you will get it back. You won´t find friends or a partner if you live in bitterness. So basically, I made a very pragmatical decision. And I also concluded that nothing is forever! Maybe life will be “normal” one day when I am long enough in the situation. It´s always the unknown that frightens us.”

Maintaining a positive attitude is allowing Patrick to live a fulfilling life in spite of his disability

Wheelblades: small high end skis for manual wheelchairs, strollers or walkers.

Wheelblades offer safety and mobility on snow and ice in winter. Because of the easily adjustable binding, it can be attached to any conventional wheelchair model, stroller or walker. With the patented quick-release mechanism, you can switch from wheels to runners with ease in just seconds. The broad contact surface of the Wheelblades optimally distributes the weight on the ground, thus preventing the small front wheels from sinking into the snow. The runners move along the ground with very little friction, and even larger irregularities in the terrain can be easily navigated. To ensure that the tip of the ski always points forward, the binding was deliberately positioned in the front part of the ski. Stability while in motion is provided by two channels on the bottom of the Wheelblades that compress the snow and let you glide as if on rails.

The product was originally developed for manual wheelchairs but the bigger version WHEELBLADES XL can also used for any babystroller or walker.

Safety Foot: Innovative walking aid.

SafetyFoot is the first lightweight “trekking shoe” for walking aids like canes or crutches. Solid, anti-slip and stable for maximum mobility and flexibility on any surface. Quick and easy to install on any walking aid, the SafetyFoot helps users navigate both everyday life and recreational activities on a firm footing. Thanks to the innovative geometry of the foot and the careful selection of materials, the SafetyFoot feels at home on any surface and in any weather. The SafetyFoot also impresses with its attractive and sporty design. Thanks to extreme stress tests and continuous optimization of the material and production processes, SafetyFoot meets the highest quality standards.

The special choice of material and construction of the sole ensures maximum slip resistance on wet and slippery surfaces. The flexible rubber joint in the upper part of the SAFETY FOOT provides a secure grip even on uneven or sloping surfaces and supports the ergonomic rolling of the walking aids. The special geometry ensures an even weight distribution and prevents sinking into loose and soft surfaces.

This product is also the right choice for elderly people because it prevents the walking aid from slipping on wet surfaces. Because I use fiberglass reinforced materials you can use it for any activity. On the one side the material is super lightweight and on the other hand it has a maximum capacity of over 600 kg.

How Wheelblades helps Patrick to enjoy nature

Inclusive cities aren’t very helpful to me when my friends are going on the beach or for a winter walk. Those are the moments when I want to be with them. Thanks to the Wheelblades I am now able to go on winterwalks with my family and even ride downhill with my son side by side with his sled. Thanks to the SafetyFoot I can join my friends on the beach and go for a swim. It´s especially those moments, where I can completely forget all my worries and simply be free. After my accident, I studied psychology in order to help people with the same fate. Over the years I realized that I can reach and help way more people, if I develop products to increase the mobility. There is nothing more powerful than being outside, free, together with your loved ones. “Actions speak louder than words”

Wheelblades and Safety Foot are shipped internationally

I started in 2012 and I have now about 100 partners in more than 20 countries. If I find the best solution, I want to make it accessible for everybody else without any geographical boundaries.

Patrick, the Photographer

Being in a wheelchair means being different. People in society are curious when they see something different and you have to get used to their views. People watch me when I move around in a wheelchair or when I park in handicapped parking spaces. Nature, however, doesn´t care about me being different and I am just a part of it. When I am all by myself in nature taking pictures, I can be 100% myself without the feeling of being watched all the time. That is a very special and peaceful moment for me. Thanks to my Safety Foot I am also able to leave my wheelchair behind and move more freely in nature. I appreciate this privilege a lot.

Another thing was the death of my brother in 1999. The time we had come to an ultimate end and the memories about him are fading like the letters of a book that is laying in the sun. With landscape photography I am capable of freezing moments and time forever.

Patrick’s accessible city

I come from Tübingen, a small medieval town in the south of Germany. At the time of my accident in 2000, it was not fun going into town because of all the cobblestones. But since then, a lot of things have changed in our favour and the city is now way more wheelchair friendly. They have replaced the big cobblestones with smaller stones and we are now able to go to town without being ejected from our wheelchairs. I don’t complain a lot because I won’t change anything by complaining. There are other ways to get to one’s goal. If you are not able to go to one place, simply accept it. People always want to help. You just have to ask for help!

What’s next for Patrick and Nicon-Tec?

I am currently working on an amazing new product that could have a very big impact for people with walking disabilities. At this time, I cannot provide many details because I want to surprise the world with a huge “boom.” Thanks to my international partners, I will be able to spread this idea/product/ possibility all over the world. We already have come very far and I hope that it won’t take too long anymore.

www.wheelblades.shop

Accessibility fo all

Project Dignity – A job. A purpose. Dignity restored.

Post author By Fred
Post date February 22, 2022
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A group of people in aprons posing for the camera

Dignity Restored with Project Dignity

In Singapore and Hong Kong, Project Dignity returns dignity to the disabled and disadvantaged. In 2006, Engineer, Mr. Koh Seng Choon, desired to do something to improve the lives of people with special needs in Singapore. He conceptualized a social enterprise project aimed at providing an always-in-demand service to the public – people with disabilities will be the ones offering that service. His vision materialized in 2010 when Project Dignity was born.

Vocation with passion. Paid on the job training, skills development, employment and service. Project Dignity started in 2010 with one food stall. People with disabilities were taught how to cook, the food was sold to the public – walk-ins and delivered. As time progressed, this concept grew in Singapore and expanded to Hong Kong. Today, the number of food stalls have increased. Another facet has been added. Seniors at residential facilities are taken on daily outings to the Project Dignity location where they are treated to lunch and entertainment. From concept to reality, Project Dignity returns dignity to the disabled and disadvantaged and over the years, has won many awards for doing this.

Being engineers by training, Mr. Koh Seng Choon and his team customize kitchen tools to fit the needs of each type of disability in their program. The world’s first customized noodle cooking machine for the disabled; point of sales machines the blind can use plus ones that can be used by people with intellectual disabilities; others that make the job of cooking much easier compensating for each person’s inability, are all an integral part of Project Dignity.

Not only are participants taught the skill of cooking, but they are also taught interview skills and guaranteed a job when all training is complete. Through the collaborative efforts of companies that support inclusive employment, Project Dignity’s graduates are often able to secure employment. If not, Project Dignity will hire them.

Alongside Project Dignity which trains in food service, employs and integrates people with disabilities into society, Dignity Mama book stores provide employment. With the assistance of caregivers, these second-hand book stores are run by young adults with special needs, selling donated books, stationery and other tidbits.

This social enterprise initiative shows that sometimes the best innovations come from simple ideas. At their locations in Singapore and Hong Kong, Project Dignity hosts private events, accommodate social outreach programs, teach children how to interact with seniors and the disabled and also provide corporate employees with-a-day in-the-life-of-a-person-with-a-disability experience.

People with disabilities are at the heart of this initiative and Project Dignity welcomes every disability, race and age.

Niki and Jimmy: disability, love, laughter, happiness

Post author By Fred
Post date February 22, 2022
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Niki carrying her disabled son Jimmy on her back

Niki and Jimmy: disability, love, laughter, happiness

My goal in life is to share my story and life with Jimmy in the hope that what people see or read will help them through whatever may be going on in their world, and to love and trust that anything is possible!

Meet Niki
I was born in Perth, Western Australia but grew up in Bundaberg, a town in Queensland, Australia. When I was 13, we moved to the Sunshine Coast, Queensland, Australia, with my mum and two brothers. High school wasn’t my thing, and I left at the end of year 10. Not long after leaving school, I fell pregnant with Jimmy and the young age of 17 years old. Jimmy was born in Nambour hospital via c-section on the 11th of April 1995, and we had a hospital stay for about three weeks. Everything was good, but I was so young, so there were just some things I did not pick up on. His grandmother noticed that when you would hold a toy in front of his face, he would not reach for it, nor would his eyes focus on it. So I went and had Jimmy’s eyes tested. This was when he was around two months old, and not long after is when I found out, he could not see and would never be able to see. So I did what I needed to do, and that was to be Jimmy’s mother regardless of finding out about his disability.

When Jimmy was around eight months old, he ended up in the hospital, and we found out he would be diagnosed with epilepsy. Again I just did what I needed to do. Life goes on. When he was three, I decided to try to ween him of the epilepsy medications because he hadn’t had one in a couple of years, and everything worked out; he never had an epileptic seizure again. On he went to a special school. Then at the age of 17, he would be diagnosed with diabetes insipidus and panhypopituitarism.

I worked full time during his school years, but once he finished, I no longer had the support or care, so I dropped back working to only three days per week. During this time, Jimmy would have a few more seizures, and I worked out what was causing these and fixed the problem without medication.

Jimmy is now 26 years young, and I am 43; we both have learnt a lot and are always changing to better both ourselves. I now have more time at home with him, teaching him everyday skills and learning new skills myself. Our life has come with struggles, but we have overcome each one with our love and perseverance and determination to grow.

I have a blog that goes into more detail about where it all started the day Jimmy was born its an insight into our life; you can find it here. www.nikiandjimmy.com

Social Isolation
I still feel like this at times. I have even said to my friends who have children it’s not that I don’t want to go to kids parties or gatherings with lots of kids, but over the years, I have watched children all play together, and Jimmy is always left out. He can’t run/walk/play like the other children, so he has to sit with me the whole time. Though it doesn’t bother him, I was once a child and I had those feelings of being left out, and I know he can hear them all playing and laughing together. This isn’t anyones fault; it just makes me feel sad sometimes. I see their kids growing up doing the things that Jimmy never did or might never do.

Being mum, I think in itself you feel isolated from your friends at times. They are all out having fun, and there are times when you just can’t be out with them. Being 17 and a mum was hard; I really didn’t have other mums who were on the same level as me. So I didn’t have people I could talk to about anything, and if I did, I would cry and have those friends say, “you always cry”. I have been around women who talk about their children going to high school, then getting their licenses, jobs and then leaving home. I never know what to say; I just sit there because that won’t happen to me. It’s awkward for me when they do this. However, I would never take that away from them by saying how different my life is. So I just don’t say much at all.

Sometimes I see blogs for parents who have “normal” children, and I see their struggles as we all have them, and sometimes it gets a bit much because some of those things that are being complained about I have never had to experience and never will. But I have noticed in recent times these feelings and thoughts have slowly disappeared, and I am not being triggered because I am working through my traumas which is helping me understand why these blogs/comments/ would make me upset. It has taken me a long time to get where I am today without feeling left out or secluded because I have a son with a disability and I have had a lot of different friend circles. I think once you find your tribe, you no longer will feel that way because they will love you unconditionally and make you always feel welcome. This doesn’t happen overnight, but I promise you this if you can sit with yourself and understand that everything you feel is valid and the way people treat you has nothing to do with you or your family, and everything to do with the way they feel you will come to find that you will be much happier with life and everyone around you.

Fun things we enjoy doing together
Most mornings, we both are up early during the warmer months, and we head down the beach, I piggyback Jimmy, and he copies the birds chirping, he knows where we are once we get to the sand, and while I go for a sunrise swim, Jimmy sits on the beach. He is always so happy listening to the sound of the ocean. We also love going for bike rides where he sits in his trailer and listens to all the sounds around him, giggling away as we ride around. He also has his own three-wheeled bike that I push and steer for him, while his little legs go around like a “normal” bike, but I am doing all the work. My favourite part is when we ride past people, and he is laughing, and others notice, look up at me, then back at Jimmy, and the smiles on their faces bring me so much joy. Jimmy also loves showers, and swimming much like me and loves anything to do with water. But with the ocean, he can be a bit unsure as it is unpredictable, and unless it’s calm, he can be quite nervous if I take him in the waves. He goes surfing for the disabled a couple of times a year, he takes a few times to get used to it, but once he knows he is safe, he will sign “more” to have another go with lots of “yays” and giggles. I used to piggyback Jimmy up a lot of mountains which he would really enjoy as well, but now he is a little heavier. I am finding it a bit harder, so we stick to easier things. Jimmy loves show rides, and even though he can’t see what is going on when I’m with him, and he feels safe, he will laugh and laugh with anything that’s fast or exciting. We fill our days with songs and lots of encouragement, and it’s what makes everything fun.

If you haven’t had the chance to meet Jimmy then you are truly missing out, he will change the way you look at life and you won’t see it but you will most definitely feel it.
Jimmy is a beautiful soul. He goes to bed laughing, and he wakes a laughing. Some days if I am not feeling the best, I’ll look at him, and he will be sitting there singing away or laughing. We laugh a lot in our home, which brings so much happiness. To be honest, sometimes I ask myself how can I be sad when I see Jimmy, my son who has never seen colours, clouds or rainbows and he is just sitting with a smile all the time. He gets excited when he hears my friends or his carers voices and gets up to give them big hugs. He has changed my life and made me realise that you don’t need everything in this world to be happy because when you are laughing, smiling or giggling, all you need is love. We are all unique, and that is what makes us beautiful and that is enough.

I am now truly happy with my life I wake up every day knowing I am who I am and that is my best possible version of myself.”I say this because I was 17 when I had Jimmy, and the day I found out about him being blind was the day I felt my heart break. The first few years of his life, I was trying my best but also, I was a bit of a mess. I was drinking out with friends a lot, and every time I would cry. I would say stuff like, why me, what did I do wrong. Though I loved Jimmy, I never wanted to feel that way, but I did and as hard as it is to admit that, I know now that was the truth. I was hurting, and it took a long time to overcome those feelings.

We all have traumas that we need to sit with and try to overcome; mine stem from a very young age right through to when Jimmy was born and being a young mum. It hasn’t been easy, and I’ve been a terrible person at different times in my life, but I have always managed to push through everything and ask myself why have I have done that or been like this.

I have forgiven myself for feeling like I wasn’t good enough and that I wasn’t doing my best even though I was at that time. I wake up knowing that Jimmy is happy, so I must have done something right.

Today and every day I choose me, I choose a life that I want to live and give Jimmy because we both deserve everything. I go to work knowing I have a job that I love. Jimmy goes to care with carers who love him like family. I have friends that support us. I can be alone without feeling lonely. All of these feelings come from love; when anything bad happens, I don’t focus on the bad I ask myself what can this teach me, what today’s lesson is, how can I change so this doesn’t happen again. Life is perfect exactly as it is, the good, the bad and even the ugly because that’s what will help you grow. It is when we grow we start to heal.

Society’s misconceptions about children with special needs:

I think people put disabled children/adults in a box and assume that they don’t know what is going on. Even though I use the word disability, I don’t like it. Because I believe we all have an ability in one way or another. Jimmy is who he is, and from a young age, doctors have said “he needs to be this or that” because he doesn’t fit in this category of height/weight/size/mental ability. But what I say who decided this who says your child has to be this or that. Why can’t they just be, be who they are without being put in a box and labelled? In saying this, I also believe there needs to be more support out there for all families because no one child is the same; we all have different abilities/disabilities. Look at each child as a whole and what specific needs each one need to have. There is no one box that you can tick for everyone.

What has having Jimmy taught me
When I was 19, I had a friends father say to me; your life will get harder. I was always worried about this, and there was a point a few years back where I thought it was harder. When your child is young, you don’t see the differences between others, but as they get older, you start to notice. I don’t like to say what Jimmy can’t do but rather focus on what he can do. I guess for me; I would say it’s not hard in the way people think it would be.

Even though he is still in nappies, I have to feed him and shower him and basically help him with everyday living skills. He is my little shining bright star the smiles I get and the laughter I hear makes everything worthwhile. He loves learning new skills, and though it might take a long time, our persistence pays off. Jimmy is always so proud of himself, and I’m always there cheering him on. We have our bad days, but they don’t outweigh our good ones.

From what I’ve shared, I hope parents will take away the following:

Understand that you are going to have so many feelings come and go some days are good other days are just terrible, but you get through this. It doesn’t happen overnight, and to be honest, it wasn’t until Jimmy was in his 20s when I really started to changes in myself and how I would deal with having an adult/child with a disability.
Take time for yourself, because if you are looking after yourself, you will be happier and that will reflect on to your family.

I had a doctor say to me when Jimmy was in the hospital at a very young age that I should take care of myself because he has seen too many families put their lives on hold and end up giving up after a while because they never looked after themselves. You mustn’t think that by putting yourself first that you aren’t a good parent; what you are really doing is not losing who you are and being a better parent for it. It’s harder to do this, than say, but don’t feel guilty taking time for you—don’t feel guilty for feeling any of your feelings. Life is a roller coaster, and we are meant to ride all those waves, the good ones and the bad ones, and each time you overcome one, you will get stronger, and it will get easier.

Just be unapologetically you, let your children be themselves. Find what you love and bring it into your family. Any obstacle you face, look at it from a different point of view. Not everything will be easy, but there is always a way you just have to trust yourself and step out of your comfort zone. Everything I have ever done with Jimmy, I always had to take that first step into the unknown, and every time, I have never looked back. We have travelled many places with friends and alone, and I have needed to put in the extra work to be able to do this, and all that work paid off. Trust yourself that you got this far and to be open to everything that comes your way, places, people, and life always works out if you allow it to flow, no resistance and always understand that what you do today has already shaped your tomorrow.

Accessibility fo all

Danielle Webb on Dwarfism: Embrace you.

Post author By Fred
Post date February 22, 2022
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Danielle Webb on Dwarfism: “Accept yourself. Embrace you.”

You can surround yourself with the best people, the most loving support, but if you don’t accept yourself, then truthfully you’re not going to feel accepted where you are. The best advice I can give is to embrace it. Embrace you.

“I am 22 year old Danielle Webb. I live in Newport South Wales, where I currently work and study, but I’m from a town called Portishead, just outside of Bristol, UK. I grew up in an all-girls household with my Mum, Auntie and Nan, until moving out into a place with my Mum and her partner in my teens, then finally finding my own feet in 2019, and moving to Newport to focus on my studies.

I am studying for my MA degree in Working for Children and Young People. I am also a part time Student Recruitment Officer for the University of South Wales, the same University which I have studied at for the past four years.
I work as a Youth Worker and Youth Communications Officer for two organisations: G-Expressions and Urban Circle Newport.

Youth Work has always been a huge passion of mine and I would describe myself as very career focused. I always love working on new projects and can very rarely fully relax, but when I do, my biggest hobby is time spent with friends. I love adventures and making memories, but my biggest love is dance, something I have always loved since I was 5 years old, but even more so since the age of 16. I have found my spark for it again and in recent years have competed in national competitions and community events across Bristol and Wales.

Life with dwarfism
I am the only person in my family to have dwarfism and what many people don’t know is 80% of people with dwarfism are born to average height families. I was one of those 80%. So, until the age of 13, I was the only person with dwarfism that I knew and saw. And that, being a teenage girl especially, did bring challenges with my self-esteem.

I loved primary school. I loved learning – and still do, but primary school was great for me because my size wasn’t too noticeable. All children are small, so I didn’t notice too much and neither did my peers. I found making friends was very easy in primary school and learning was the main focus for me. In secondary school however, I was the smallest amongst 2000 pupils, even when I was in my final year – I was still the smallest. This was when I felt I really started to learn what life with dwarfism was like – and it was hard at times. I did experience bullying for a few years and found it very hard to find a circle in which i fitted in – like i think a lot of secondary school students do regardless of their physical makeup, but having a physical difference made that even more emphasised.

I had wonderful friends, who I still value to this day, but secondary school was hard. It was hard to focus on my education when it felt like there was so much focus on what I looked like on the outside. Sometimes it felt like I had to work harder than everyone else to prove myself. I’m not sure who I was trying to prove myself to, but that’s the feeling that being on the receiving end of bullying can give you sometimes – that sometimes just being yourself, isn’t enough – but this isn’t the case!

College and University then were big steps for me, but university especially was a time in which I felt i could really reinvent myself. I always had doubts of whether university was for me, because everyone around me who I saw achieving their life goals were all twice my height. I never saw people with dwarfism going to university. But becoming part of the organisation Little people UK shone a light for me that: we can achieve the same life milestones as everyone else; I saw people with my condition go on to become doctors, teachers, lawyers, something which I hadn’t been exposed to before, and it did give me hope, and the motivation to then move away from the negative aspects of my previous education settings and go out and chase the dreams of what i really wanted to do, and that was youth work.

Changes in public perceptions about

dwarfism
Dwarfism, I do feel, has become more accepted over the years – compared to my teenage years, yes as a whole I am much happier within myself and do feel part of the wider community, but a lot of that comes down to my own self-growth. As a society, I believe we still have work to be done. Personally, and whilst I know I am biased, I don’t see why someone being a different height to another person, should be looked at to any other extreme than someone who has a different hair colour, eye colour, shoe size etc. The only thing that separates myself from those around me, is I am about 2ft smaller. The rest comes from people’s perceptions and attitudes – that’s the real barrier, that dwarfism, along with many disabilities still are seen as something to be feared, and it comes down to a lack of education. People fear the unknown, and dwarfism is still that. Dwarfism is still not something which is seen on the same level as wheelchair users, or visual impairments. Even though 1 in 25,000 people are born with dwarfism – and to average height families, so truthfully, any one of us could have a child, or know someone who is affected, yet it’s still seen as something that is so distanced from what society deems as ‘normal’.

Self-confidence
Self-confidence is exactly what it says, and has to start from within. From someone who knows first hand, you can surround yourself with the best people, the most loving support – but if you don’t accept yourself, then truthfully you’re not going to feel accepted in where you are. The best advice I can give is to embrace it. Embrace you. The good, the bad, the ugly. That’s what I strive to do, and I don’t always get that balance right, but 90% of the time, I am a positive advocate for dwarfism, because I know and have understood now that dwarfism has made me who I am. Everything I have in my life, right down to my friendship groups, my job, my dance team, in some way, my dwarfism has led me to that, because dwarfism has led me to the person I am.

I don’t think I would have such a big passion for helping other people, and young people especially had I not experienced some of the challenges I did in my own adolescence – therefore, I count my dwarfism as a blessing, even more so because it’s led me to make some incredible friendships – through the charity I am involved in, Little People UK, it’s brought me to some incredible experiences. Yes, it’s brought its challenges, but ultimately it’s shaped my life out how it is – and once you start focusing on the bigger picture, that’s where you leave more room for the positives. Also, like my supervisor at work always tells me, ‘Do you, because there will always be people looking to rain on your parade in some way. You could be 4ft tall or 6ft tall, a size 8 or a size 18, everyone has their own insecurities, and everyone has experienced some type of discrimination, ignorance or such behaviors, from the outside world. Therefore do you. Because it’s always mind over matter, the people who are real and true don’t mind. The people who try to bring you down in any type of way- they don’t matter. Truthfully the only person whose responsible for your happiness is you – and we know ourselves what makes us happy – and that’s the same that can be said for anyone, dwarfism or not. We are more similar than we think and confidence is something that should be promoted in everyone, not just in those with protected characteristics or disabilities.

Representation in the media
As someone who has always loved dance, theatre and drama, representation is so important to me. Growing up, that’s the one thing I feel I didn’t have. As a dancer and performer, I felt that I could never go into the media industry . . . not unless I wanted to play one of Snow White’s Seven Dwarves or Tinkerbell. Even now, over the last couple of years, admittedly I have been offered various TV opportunities, but 9 times out of 10, I’ve turned them away because it has been clear I have been wanted not for my ability, but because of my physical makeup. Representation for disabilities as a whole…. has a long way to go! Massively. There is so much potential out there; people with dwarfism have talents like anyone else. Talents that if given the opportunity, are capable of more than just the typical ‘dwarf’ roles. Not to say these roles are bad, not in any way. I have friends who do panto, and I love nothing more than seeing them on stage – doing something they love to do, but is it any wonder that there is such a lack of education, especially with children, if the only time they are seeing dwarfs – are in a mythical or magical setting. Even in TV programmes, books, art, anything . . . I don’t see people with dwarfism represented.

In all of the books I had as a child, there were characters from different ethnicities and races, some characters with glasses, different hair colours, wheelchairs etc, but never one with dwarfism. As a child who was the only one in my family with dwarfism, that’s something that has an affect, and as a performer/dancer, it made me really question if dance was a path for me. Did people with dwarfism belong on a stage just as themselves? No costumes or mythical powers? It took me a really long time to overcome that – and to realise that the answer was yes, we do – and that’s something that I really strive to make a difference in, it’s one of the reasons I wrote my book, but also – it’s the reason I put so much into my blog and my social media accounts – now venturing onto TikTok and YouTube and visual platforms to share my journey, because there is more to our life than the media puts out there and people with dwarfism can and should have a platform to showcase what they want to do, without needing to try and ‘be’ a character other than themselves.

Her reasons for writing the book
My book, Mummy, There’s a New Girl was published just over three months ago. It is a book that highlights diversity and that it’s ok to be different. When a new girl joins the class, many of the children pick on her for her looks, but one brave little boy looks past her differences and learns that really – size is no big deal!

This is the book I wish I had as a child and even though, really, I’ve only been in the process of publication for about 9 months prior to it’s release, this started for me when I was sixteen. Studying childcare at college, I worked in so many settings over my years in training and was very fortunate to work with so many children and families in that time, but not once did I ever have a resource that helped me to educate children on why even though I was an adult responsible for caring for them, some of them were still taller than me. I needed something and It didn’t exist, so I wrote it myself and used it for five years as a learning tool, just on a PowerPoint presentation, and it wasn’t until 2020, through my own development and experiences did I begin to think that maybe, this could be something that could help others. It’s now published and it gives me great pride because there will never be a day again where a resource doesn’t exist. There will always be a book available now for children to relate to, for someone to see someone who looks ‘just like me’.

The book is available on Amazon, WHSMITH, Waterstones online – and also other small retail online stores.

To everyone out there
Educators, parents, whatever role you’re in, please have that conversation with your children, about diversity and about difference, not just dwarfism but of all kinds of differences. Start that conversation early, because it matters, and it does have an impact on your child but also on the people your children will meet later on in their life.

Whilst my book does focus on dwarfism, everyone can relate to being the new girl, everyone can relate to sometimes feeling like they don’t fit in, and everyone can relate to seeing someone, in class, at work, on the street etc., who looks different. Kindness and the message of accepting one another is something that everyone should value, even if you yourself is not directly impacted by dwarfism or disability.

Blog: Lifebeinglittle.co.uk
Facebook: Life Being Little
Twitter: @lifebeinglittle
Instagram: @lifebeing_little

Accessibility fo all

Able Eyes: Know before you go.

Post author By Fred
Post date February 22, 2022
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Able Eyes: Know Before You Go.

I’d like to think that Able Eyes is part of the future of accessibility. Imagine if EVERY business in the US had a virtual tour that visitors could view beforehand.

“My story starts back in high school when I volunteered at an MDA Summer Camp. At this camp, I spent a full week assigned to a “camper” with Muscular Dystrophy caring for and creating memories in a safe space with all of the accommodations necessary to swim, eat, dance (prom), and participate in activities that campers may not otherwise be included in due to physical needs. The camper I was assigned to was Jessica, who ended up becoming a lifelong best friend. This experience was the moment I realized my purpose on this earth was to help people with varying abilities have the same experiences as their peers.

Jessica and I remained friends through the remainder of high school and into college where we lived together. Supporting someone in an all-accessible camp was one thing, but living day in and day out in a world that isn’t fully accessible is another. People were kind, and always willing to help but we certainly had our struggles . . . especially in public restrooms that may not have been big enough for her, her chair, and myself to transfer her. It certainly would have helped if we knew beforehand what to expect.

I graduated and started my career as a special education teacher while Jessica continued her education toward counseling, (in hopes of helping others with disabilities navigate through life and the challenges that come along with it). Jessica had nearly completed her Master’s Degree when she fell ill with what would probably have been a common cold for many, but due to weaker muscles in her chest was unable to cough hard enough to break up the mucus, leading to infection, and eventually to her passing in 2015.

During my earlier years of college (before Jessica joined me), I started working as a Behavioral Aide in the homes of children on the Autism Spectrum. These were children with significant needs at risk of being removed from their family home due to violent behavior toward themselves and others.

My role was to create and implement behavior plans one-on-one to help alleviate the stress on the family; allowing the Autism Spectrum children to remain in their home. This was the chapter in life that started my interest in working with children on the spectrum (working toward a special education degree specializing in ASD).

After college, I immediately started my career as a special education teacher working with students on the Autism Spectrum. For 7 years I worked in the classroom, 1 year as an ASD Teacher Consultant, 2 as an Assistive Technology Coordinator, and 3 as an Assistant Principal. In all of these positions, I talked to parent after parent that struggled to take their children to the doctor, the dentist, the grocery store, and very few ever traveled or went on vacations as a family. One of the common characteristics of children on the Spectrum is a need for routine. Transitions to new, unexpected places or events would often cause significant anxiety leading to potential behaviors that not only could be dangerous but were also embarrassing to parents because people often can’t “tell” their child has Autism just by looking at them. What if there was some way to help children and families prepare beforehand.

The idea for Able Eyes came to me during my time as a classroom teacher. I was attending a conference in Chicago (not related to virtual tours), but it was the first time I had ever seen a virtual tour and I thought “THIS IS IT! This is the thing that could help parents, help students, help people like Jessica to “Know Before You Go,” creating opportunities for people to try new things, visit new places and live their best life.

Jessica knew of my dream and fully supported it, however, it took her passing to find the courage to leave the stability of the school district and take a chance on my dream in 2017. What I do, I do in honor of Jessica knowing that she is here with me supporting me and cheering me on to make my difference in the world.

Able Eyes and the need it addresses
Able Eyes is a virtual tour hosting website (App coming soon) functioning similar to YELP. A user can enter their location and category of interest to find virtual tours across the US (soon beyond). By having virtual tours accessible and easy to access, users can look at and explore a place such a restaurant, hotel, park, school, or any place open to the public from the comfort of home prior to visiting.
Americans With Disabilities Act has certainly been a step in the right direction for people with physical disabilities gaining access to the community, however we have very few accommodations for people with invisible disabilities such as ASD, Anxiety, and PTSD.

The disabilities that benefits most from Able Eyes
Able Eyes really could benefit any person with or without disabilities however, the company was started from the heart of accessibility and can help so many people feel comfortable both in their community and while traveling.

Examples Include:

* Children and Adults on the Autism Spectrum (1 in 52 births)
* Children and Adults with Anxiety
* Wheelchair Users
* Veterans with PTSD
* Children and Adults with IDD
* Elderly
* Mothers with Strollers
* Children and Adults with Hearing Disabilities
* And after almost 2 years in a pandemic, people are more understanding and empathetic of isolation and the anxiety of going out into the public/concerned about safety.

The types of businesses that can use Able Eyes
Basically any brick and mortar business open to the public or outdoor parks can use Able Eyes.

Examples include:
*restaurants
* museums
* parks
* theme parks
* schools
* zoos
* community resources (Arcs, food pantrys, disability services, veteran services, etc.)
* doctor offices
* hospitals
* dentist
* retail stores
* grocery stores
* therapy centers

Every moment is a proud moment – one not more important than the other. For each new business we include in Able Eyes, I think “if even one child or person gets to experience this zoo, this museum, this park, or this college because of Able Eyes, then we are doing the right thing.”

The future of accessibility
I’d like to think that Able Eyes is part of the future of accessibility. Imagine if EVERY business in the US had a virtual tour that visitors could view beforehand. Through this journey, I have met so many amazing people doing incredible things in the space of accessibility. If we could all come together to include virtual tours, audio descriptions, closed captioning, social stories, and accessibility evaluations in each business the world would instantly become more accessible to all.

www.ableeyes.org

Accessibility fo all

Howard Rosenblum: A life of advocacy

Post author By Fred
Post date February 22, 2022
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Howard Rosenblum leads a life of advocacy

Written by St. Cloud State University students: Tricia B. Simon and Jaime L. Jensen

Howard Rosenblum is a man who has so seamlessly comingled his personal and professional missions of advocacy for the deaf community that he plans his vacations around opportunities to travel the world to meet deaf people, engrossing himself in learning their sign languages and the nuances of their respective cultures. From his very first job as a camp counselor for children with cognitive disabilities, to his current role as CEO of the National Association of the Deaf (NAD), Rosenblum has been dedicated to advocating for human rights, for not only those in the deaf community, but for all persons with disabilities.

How does a young man from Chicago come to lead the nation’s premier civil rights organization of, by, and for deaf and hard of hearing individuals in the United States? He attributes it to having great parents.

At age two, Rosenblum lost his hearing due to a case of meningitis. His parents, who had not known any deaf persons prior to their son’s hearing loss, immediately immersed themselves and their young son in learning about his new community and ensuring he had the educational resources to achieve any goal he set for himself.

Like many parents, Rosenblum’s family had big dreams for their child. While they preached to him that he could be anything he wanted to be, they also not so subtly guided him toward becoming a doctor or lawyer. One of these “nudges” came when Howard was only 12 years old. In his words, Rosenblum’s parents, “dragged me to watch a presentation by Lowell Myers, one of the earliest deaf lawyers in this county. Seeing a deaf lawyer at that age inspired me to believe that deaf people could do anything including suing hearing people!”

Despite a supportive childhood in Skokie, Illinois, the road to becoming a lawyer was not all smooth sailing. Rosenblum graduated from Evanston Township High School and went on to pursue an undergraduate degree in Computer Engineering at the University of Arizona. This experience was one of personal growth and self-discovery for Rosenblum as it was here he began to realize he had a calling to engage in advocacy work with the deaf and disability communities. Still unsure of what the future would hold, Rosenblum determined law school was a natural next step.

A CALL TO ACTION

While applying to law school and during his tenure at the Illinois Institute of Technology/Chicago-Kent College of Law, Rosenblum remembers thinking he would combine his engineering major and law degree to go into the field of Intellectual Property (IP) Law. However, when it came time to seek out internships with IP law firms, no one was willing to give him a chance. Even after graduation, IP law firms were not forthcoming with offers. Instead, while he was a law student, Rosenblum accepted an internship with a disability law clinic at Northwestern University and subsequently passed the Illinois Bar exam in 1992, two years after the Americans with Disabilities Act was signed into law. Shortly thereafter, he began a decade-long stint at a small law firm focused on Disability Rights, Special Education Law, Mental Health Law, Non-Profit Law and Probate Law. Little did he know he was setting the foundation for much of what he does now as the CEO of the National Association of the Deaf (NAD).

In the early 1990’s, Rosenblum was the only Culturally Deaf attorney in Illinois. Word spread quickly through the Deaf Community and soon Rosenblum found himself turning down a multitude of cases outside of the scope and practice of his firm. Even though the ADA required attorneys to provide Deaf clients with effective communication options, many were not aware of this obligation or simply did not care to comply.
Rosenblum recalls,

“This lack of access to legal services bothered me greatly, so I decided to do something about it. At first, I would find friends of mine from law school who could take on deaf clients in various types of law and would be willing to provide a sign language interpreter for the communications of those deaf clients. But I began to get requests from more and more deaf people who needed legal representation that was accessible to them and not just from the Chicago area, but the state of Illinois as well as across the Midwest.”

Thus, the Midwest Center on Law and the Deaf (MCLD) was born with the mission to find “deaf-friendly lawyers to represent deaf and hard of hearing people from across the Midwest who needed legal representation in any area of the law.” MCLD was the catalyst for Rosenblum later bringing this concept to NAD and building it into a nationwide service.

Getting Involved with the National Association of the Deaf (NAD) The NAD and Rosenblum were acquainted long before he became CEO. At the start of his legal career, Rosenblum developed an ongoing dialogue with the NAD and Attorney Marc Charmatz who has faithfully served the NAD since 1977. Rosenblum would occasionally check in with the NAD to discuss ongoing civil rights cases as well as legislative efforts.

In 2004, the NAD invited Rosenblum to serve on a committee to propose changes to its operations and structure. Following that two-year endeavor, he served as chair of the Policy Committee from 2006 to 2011. In 2011, the NAD welcomed Howard Rosenblum as Chief Executive Officer, tasked with leading the agency’s long-standing mission to preserve, protect, and promote the civil, human, and linguistic rights of all deaf and hard of hearing people in the country.

Today, Rosenblum and his team at NAD work tirelessly in their advocacy work to impact national and worldwide policy makers in an effort to support the human rights of persons who are deaf or hard of hearing through initiatives including early intervention, education, employment, health care, technology, telecommunications, and youth leadership opportunities such as National Deaf Youth Day, Youth Leadership Camp, College Bowl, Jr., and the annual Pitch Competition for young adults.
Words of Wisdom When asked for parting words of wisdom regarding his advocacy work and that of the NAD, Rosenblum shared, “Deaf people and disabled people do not want pity. We want education, employment, equality, and enjoyment of life. Include us in everyday life and respect us, that’s all we ask. The National Association of the Deaf is here to work with anyone who wants to make their programs and services accessible to 48 million deaf and hard of hearing people. Failing that, we’ll see you in court, smile!”

For more information on NAD’s programs and services, or to make a donation, please visit www.nad.org

Accessibility fo all

Gestures is transforming the way the visually impaired access the internet.

Post author By Fred
Post date February 22, 2022
No Comments on Gestures is transforming the way the visually impaired access the internet.

Gestures Ltd. Is Transforming the Way the Visually Impaired Access the Internet

When I think about our product, I see a revolution in the world of internet usage not just for the visually impaired, but among many people who want fewer screen hours or do not get along with the existing current user experience

As Eyar Shtabinski, founder and CEO of Gestures Ltd., was researching the market for visually impaired people, he decided to investigate the area of smartphone usage. He wanted to see how with the help of some technological advancements he could improve the experience for the visually impaired smartphone user.

“When you consider a visually-impaired person’s sensory problem, a smartphone has many ‘senses’ that can fill in the gaps”
Shtabinski adds, which drove him to start examining how the smartphone could be used with special services to help the visually-impaired.

“Today, our goal is to make the internet services accessible to the visually impaired and allow them to use a smartphone in a simple and intuitive way that even a sighted user would want to use our product.”

The team at Gestures has developed a unique and innovative user interface that combines a personal assistant feature and the use of gestures and voice commands for browsing websites.

With natural language processing (NLP) technology and machine learning models, the application allows for maximum user adaptation and the development of a smart system for the simplest, most efficient web use possible.

As of today, the company is still refining the app, with the user interface patent pending. However, the company even closed an order for their app with one of the leading blind associations in Israel.

“Gestures up is looking for the right connections for partnerships, collaborations, and investments that will advance our mission of realizing this technological solution.”

How did Eyar get to the point where he is developing technologies for the visually impaired?

Eyar had his first introduction to the challenges of the visually impaired while studying behavioral sciences and psychology at the College of Management in Israel. During his research methods class as he was investigating municipal traffic light communication, his future business partner shared with him how someone in his family was going blind. This family member was doubting his career progression and family life, let alone his own difficulty of leading everyday interactions. In hearing the difficulty of going blind, Eyar was intrigued to learn more about how he could help.

Turning the negative into a positive, Eyar and his partner chose to shift directions from traffic lights and focus their research on what solutions and technologies existed for the visually impaired. Eyar was shocked to learn just how little blind infrastructure and technological innovations exist for these people. “There is a major problem for blind people, both in the house, and outside of the house, using the web…life is truly difficult at times for them”.

As part of his research, Eyar met with dozens of visually impaired men and women, ages 16-80, throughout Israel, to learn about the challenges these people face in their houses, in the external environment, and specifically, in using mobile phones and the web.

“We really wanted to understand these people’s pain points and get to the core of the issues,” Shtabinski emphasizes, “in this way, we could provide a more comprehensive solution for the end user”

Eyar’s goal is to develop an app that is easy and intuitive for a blind person to use from the moment they download it. The artificial intelligence (AI) component helps simplify the process even further. The system even allows the user to create vocal and gesture shortcuts to help shorten activities and to help bring users the content they want, without excess information overload. Gestures is closing the gap and bringing a more accessible future for visually impaired internet surfing.

www.gesturesup.com

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Jo Joshi’s DMCFinder

Jo Joshi’s DMCFinder

Written by St. Cloud State University student Taylor Mulcahy, B.A. in Psychology.

DMCFinder can be used by people with disabilities as they plan their travel.

Jo Joshi grew up in Nottingham, United Kingdom, and attended De Montfort University in Leicester. Her parents are her biggest inspiration who taught her that: “life is supposed to be a journey and not a final destination, keep learning, keep enjoying and always keep going.” She studied Computer Science and completed her MSC in E-Commerce Technology at the University of Derby.

While she enjoyed her time at University and never planned to be involved in the tourism industry, when she embarked on that journey, she loved it. Joshi worked in various hotels in the UK during the past 15 years in hospitality and corporate event roles. Pre-pandemic, she worked for a company where she represented global DMCs (Destination Management Companies) in the U.K.

A DMC is a professional company providing services in the travel industry. They possess specialized knowledge of local culture, activities, tours, resources, transportation and program planning logistics. DMCs are accredited by the Association of Destination Management Executives International (ADMEI), and held to high ethical standards by the Accredited Destination Management Company® (ADMC). These standards include accommodating the needs and goals of their clients and using their best efforts to meet those needs. Moreover, ADMCs administer surveys at the conclusion of programming in order to ensure quality control.

Joshi developed DMCFinder during the pandemic. It is a platform that easily connects event planners to global DMCs. They use it as a central database for key items such as venues and accommodations; to plan corporate conferences, festivals, sporting events, and more. DMCFinder boasts a very user-friendly interface with its virtual options. Additionally, the benefits of using DMCFinder is that it saves time and support is available every step of the way.

DMCFinder can be used to aid individuals with disabilities as they plan travel and search for accommodations. Event planners may need to find language interpreters, accessible hotels and those with modifications for Deaf or Hard of Hearing clients, amenities for travellers with developmental disabilities, adapted transportation, etc., and DMCFinder’s database will have that information which is easily accessible. While DMCFinder was not initially created for the disabled population, it is a site they will find extremely useful.

Joshi feels that travel is both an education and opportunity to be enjoyed by everyone, regardless of ability, and as the pandemic adjusts the travel industry, it is a great time to push for inclusion and change. Businesses should consider everyone’s accessibility needs in order to make travel enjoyable and easier for all. She explains that, “After the pandemic, I think there will be a new way of thinking about how to move forward. Everyone has a right to be happy and to be included in all the opportunities life has to offer.”

There is a widespread misconception that making changes to infrastructure and other things within the tourism industry, so it will be more accessible, would have a high cost, but the more options there are available for travellers, regardless of their ability, the more profits the industry will enjoy because everyone can now be accommodated.

The biggest misperception is that it is difficult for people with disabilities to travel due to insufficient accessible resources, but this can be changed with consistent education and awareness. The United Kingdom, the United States, Portugal, Spain, France, Germany, Poland, United Arab Emirates, Australia, Hong Kong, and Singapore are some of the most accessible countries to travel to, in Joshi’s experience. She explains that creating more awareness about what the disability community wants from the travel sector, and how they can help to make their journey easier – in both the corporate and leisure sectors, could really inspire change. With this, Joshi concludes with her own advice: “I always feel you have to be grateful for life and you have to live it to the fullest everyday, and people with disabilities are no exception!”

www.dmcfinder.net

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Allan T. Brown: a vacation changed his life

Post author By Fred
Post date February 22, 2022
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Alan T. Brown: A Vacation in the Caribbean Changed His Life Forever

We need to make sure that when individuals with a disability want to travel, they do not have to go through so many hurdles just for a trip that somebody else would normally take. It would be great to get on the plane with ease, check into a hotel knowing that the bed is the right height, and you can use the bathroom as well as public transportation.

By St. Cloud State University students: Michelle Buonfiglio and Jordan Radford

Alan T. Brown is a man of action. For 30 years, he’s advocated for people with disabilities and mentored countless individuals with paralysis through those first, important hours and days after injury. As charismatic as he is compassionate, the Director of New Partner Engagement for the Christopher and Dana Reeve Foundation brings together philanthropists, celebrities, and just about every new friend he meets to fund care and develop cures for people with paralysis. Spend a few minutes getting to know him, and it soon becomes clear: Alan T. Brown is nowhere near finished making change happen.

To understand what motivates and inspires Alan to help others, look no further than the people and events that influenced him as a young man.

“I was not new to under-standing spinal cord injuries.” In 1985, his best friend became a paraplegic in a car accident. It was their senior year in high school. “When Danny got hurt, I just knew I needed to do something. Organizing a fundraiser at Sports on Broadway on the Upper West Side was just the beginning.” Alan raised $25 thousand in crucial funds for spinal cord research, and sent them off to Dr. Barth A. Green at University of Miami in December, 1987. What happened next changed Alan’s life, and would impact the lives of thousands of people with spinal cord injuries for years to come: “I ended up there six weeks later. Go figure.”

Not long after, Alan and his brother took action in Alan’s hometown of New York City to foment change for wheelchair athletes in the world-renown New York City Marathon. He sets the scene:

“Back in 1990 when I did my first marathon, they started the wheelchair division about four hours before the race actually started. A lot of the streets were not closed in Brooklyn, and when I finally got to Central Park ahead of the lead runners, I was physically stopped and told I could not continue.”

He says this was his first taste of discrimination, and being stopped from finishing the marathon in 1990 was frustrating. “I ended up being a little bit aggressive, and getting my point across, and they finally let me go.” Alan’s brother, Dan Brown, an attorney, saw what happened, and was moved to lead a class-action lawsuit on behalf of a group of wheelchair athletes.
In 2000, Dan won the pro-bono lawsuit, and that year, the New York City Marathon introduced a separate wheelchair division that featured prize money. Alan clarifies the point of his advocacy for equity and change for wheelchair athletes: “We are not on the course pushing 26.2 miles just to inspire other people, we are there just like everybody else: to finish a race. That was my first big push-back that I had to deal with. But in the end our solution paved the way for so many other individuals to participate.”

Alan credits his father with his drive to make things right, and to help people as a way of life. His role model, he recalls his father advising, “It’s not about recognition, it is about getting things done.” When he asked his father why anything should be done, the response was always, “because that is what we do.” Still, Alan leaves one with the impression he loves not just the act of helping people, but the act of engaging with individuals and bringing them together.

People are drawn to Alan, as well. His longtime friend, Dr. Jason Cohen, praised Alan during a recent episode of his podcast, Gross Anatomy. “Everybody knew and loved Alan growing up,” Jason said. When Alan is asked about Jason’s remark, he says he always was just a people person. “I think it’s just my personality and being a real New Yorker. My family was in the retail business and I was always working there as a child, interacting with individuals.” Alan says his commitment to helping others runs deep: “I always saw the community in New York, coming up where I grew up, and our synagogue, giving back,” he continues, “and that is the fabric of who I am.”

It was only natural that Alan would become involved with another family whose commitment to service runs deep: the family of Christopher and Dana Reeve. After attending a conference in Washington, D.C. at which he first understood what the Reeve Foundation meant to people in the paralysis community, he met the Reeve children. Later, after they were introduced, a special friendship developed between Christopher and Alan. “We went to hockey games and had many conversations together. I keep him and Dana very close to my heart all of the time. I am lucky enough to be friendly with all three of his children.”

Today, Alan serves as Director of New Partner Engagement for the foundation, and his own Alan T. Brown Fund, thrives within it directed by his mother. Alan is delighted by any opportunity to talk about the Reeve Foundation’s programs focused on ‘today’s care, tomorrow’s cure,’ including their flagship National Paralysis Resource Center. Over 20 years the foundation has awarded $34 million in Quality of Life grants to nonprofits that need help funding programs to assist people living with paralysis. In addition, the National Paralysis Resource Center serves 100,000 individuals and families each year through free programs that include certified peer mentoring, advocacy, and research.

Alan shares that COVID has made it challenging for people dealing with new injuries to navigate their situation, and isolation presents a challenge. He’s proud to note, however, that the foundation and its network of teams has been able to do much to mitigate that. “During COVID, the foundation has actually done so much work to help educate individuals living with paralysis on so many different levels through the National Paralysis Resource Center.” Alan is a certified peer mentor in their Peer & Family Support program, which has helped approximately 11,000 people in 40 states.

When he considers the short term versus the long game, Alan would like to see more change that improves quality of life and opportunity for the more than 5 million Americans with paralysis. “I have been hearing the word inclusion for decades, and hopefully now the world itself, and companies as well, are ready to be inclusive. Hopefully corporate America will start hiring more individuals with ability, and more people will stop seeing people’s disabilities.”

As a frequent traveler, he sees a need to eliminate everyday challenges of navigating public facilities that people without disabilities often don’t realize exist: “We need to make sure that when individuals with a disability want to travel, they do not have to go through so many hurdles just for a trip that somebody else would normally take. It would be great to get on the plane with ease, check into a hotel knowing that the bed is the right height, and you can use the bathroom as well as public transportation.”

To address those challenges constructively, another foundation Alan co-founded, “Access Israel helps individuals without disabilities through experiential learning and interaction how to better work with and understand what inclusion is all about. Whether it’s going into high schools, colleges or local religious communities of all ethnicities, the different programs that the organization runs change individual lives on both ends of the conversation.”

Alan believes as part of improving their quality of life, people with paralysis can learn to advocate for themselves to counter misconceptions. “Most people with a disability have amazing ability, and that is what people need to see. People should not look at others for what they cannot do but for what they can do.” Alan illustrates what he’s learned over the years about the role of agency in improved quality of life: “When one becomes paralyzed, they need to make sure that they advocate for themselves. One should always stand up for their rights, and not be afraid to reach out and ask for help.” Alan’s foremost advice? “Don’t focus on the negative; focus on the positive.”

As a mentor and advocate, Alan wants to see change for people who are recently paralyzed: longer rehabilitation stays; better insurance benefits to assist overburdened families; and most important, coverage for proactive and preventive care to help individuals lead healthier lives.

As a man of action focused on the future, he’s ready to do more to help people with paralysis, and to build connection and community among them and people who want to help find a cure. “I feel the next few years for the foundation and the paralysis community are very bright. There is some amazing research on the forefront right now.” He is enthusiastic about epidural stimulation, which is implanted, as well as transcutaneous stimulation that is delivered above the skin. “I have seen the results first hand, and it is amazing to see the progress individuals are making.”

What is Alan most hopeful about?
“I feel that people with numerous disabilities are going to benefit in many ways from what is going on. As we say at the foundation, ‘Go forward every day.”

Learn more about Christopher and Dana Reeve Foundation at
christopherreeve.org

Find or become a Reeve Foundation Peer & Family Support mentor here

Accessibility fo all

A story of thankfulness

Drs. Kathryn Johnson and Amy Hebert Knopf

A story of thankfulness

A theme of the collaborative work of Drs. Kathryn Johnson and Amy Hebert Knopf is “thankfulness.” One of the most thankful aspects of their work was finding each other in 2013 at a conference in St. Paul. Though their life journeys were quite different, with Kathryn growing up on a farm not far from St. Cloud and Amy growing up in southern Louisiana, they both arrived at St. Cloud State University in Minnesota to begin their careers as faculty. Kathy started at SCSU in the fall of 2005, after serving as a teacher for Deaf and hard-of-hearing students in St. Cloud Schools for over 15 years. Amy started her career at SCSU in the fall of 2013 after working in research and outreach for improving services for Deaf and hard-of-hearing individuals.

It was not a coincidence that the conference where they met in the fall of 2013 focused on internationalizing teaching and learning within university classes, as their mutual passion for international work became evident over the next year of emerging friendship.

Kathryn’s international advocacy began during her first trip to China in the summer of 2000, where she joined a Gallaudet University China Delegation. During her three weeks in China, Kathryn fell in love with the country, the culture, and the people, inclusive of individuals with disabilities. Her trip to China was life-changing and compelled her to focus her dissertation research on Deaf education in China. In 2014, after numerous trips to China leading education abroad programs for students, teachers, and administrators during the previous 14 years, Kathryn finally convinced Amy to join her on a trip to Beijing. One of the goals of the trip was to assist a graduate student, Aaron, on his thesis research where he was assessing accessibility in Beijing. As a young adult who was a wheelchair user, the trip was an eye-opener for both Amy and Aaron in an area of immense need. Thus began the journey of advocacy for Amy within China. For Kathryn, this meant finally finding someone who was just as passionate, dedicated, and determined to make a difference in the world.

An area of mutual expertise for both is in working with individuals who are Deaf, with both being fluent in American Sign Language and having strong connections to the Deaf community. This connection has strengthened their passion for working on a global stage. They have organized and led delegations to China for teachers and administrators from schools for the Deaf in the U.S. In June of 2018, they collaborated with Changchun University on hosting a conference on Deaf education and employment in China. In addition, they facilitated a panel presentation of delegation members at the U.S. Embassy to a room filled with Deaf adults from Beijing. An outcome of this delegation was the initiation of the “U.S. China Deaf School Project.” To support this initiative, the first cohort of Chinese student interns who were Deaf came to the U.S. to teach Chinese sign language and culture at three schools for the Deaf. This pilot team was supported by SCSU Visiting Scholar Xiaorong Zhou, who is Deaf. She has been researching and studying the teaching and learning of American Sign Language to help develop the learning of Chinese Sign Language. Kathryn, Amy, and Xiaorong have also been collaboratively researching the development of Chinese sign language interpreter education and certification in China, seeking partners for advancing this area of critical need within China.

Foundational to their continued work is advancing knowledge and understanding of the U.N. Convention on the Rights of Persons with Disabilities and the U.N. Sustainable Development Goals. With an emphasis on SDG #17, revitalizing the global partnership for sustainable development, Kathryn and Amy have worked hard to develop a strong network of partners to support their work, including The Harkin Institute. Through this connection, Amy served as one of the first George H.W. Bush Fellows in 2018, during which time she was able to complete her sabbatical in China researching Deaf education. The other George H. W. Bush Fellow was SCSU Visiting Scholar Dr. Xuan Zheng, who is also Deaf and the first Deaf person in China to earn a Ph.D. from a Chinese higher education institution, Fudan University. The opportunity for Amy to have dedicated time to research and study Deaf education in China contributed to and complimented the dissertation Kathryn completed 20 years with The Harkin Institute and the Zero Project has opened the door to partnerships with numerous other global organizations, inclusive of Maahs Travels, the International Disability Alliance, World Enabled, and Global Minnesota.
Kathryn and Amy have both dreamed of creating a new center at St. Cloud State University for numerous years that would institutionalize and strengthen their global disability advocacy, research, and development. This dream is becoming a reality with the launch of the SCSU Center for International Disability Advocacy and Diplomacy in the fall of 2021. This Center will be housed under the Office of the SCSU President and will serve as an innovation hub with a mission focused on five pillars of development:

(1) strengthening cross-cultural knowledge and understanding through global academies;

(2) developing strategic networks and partnerships for advancing the U.S. CRPD and SDGs;

(3) promoting and advancing the rights of people with disabilities through education and training;

(4) promoting scholarly research, training and development; and,

(5) promoting diversity, equity, inclusion and accessibility at all levels of public policy and diplomacy. Kathryn and Amy will serve as the Directors of the Center, which will provide dedicated time and energy for grant writing, publications, and program development with partners.

The first significant event for the Center will be the Fall 2021 ABILITY Event that culminates in December in Dubai, UAE, at the Dubai Expo 2020. A six-part speaker series during fall semester of 2021 will highlight the U.N. CRPD and SDGs, with prominent presenters from around the globe sharing their expertise on these two critical topics. Kathryn and Amy are part of the World Expo Disability Coalition that is hosting an #EndExclusion and #PromoteInclusion Festival and Celebration Week at Dubai Expo from November 28-December 3, 2021. The week will feature events focused on health and wellness, technology, arts and culture, education, employment, accessibility, disability policy, and advocacy for and with people with disabilities. The week will culminate with the U.N. International Day for Persons with Disabilities on Dec. 3 event held at the Expo.

This story of thankfulness highlights the synergy and passion that exists within the collaborative work of Kathryn and Amy. Both are personally and professionally committed to advancing disability rights globally. Kathryn’s personal connection is through having a child with a disability and growing up with a brother with a disability. Amy’s personal connection is through having a disability herself. The intersection of their personal connections to their professional passion keeps the two grounded in practice founded upon research and data-driven decision making as university teacher-scholars.

With so many challenges existing in the world today, it helps to pause, reflect and remember what we are truly thankful for each day. By sharing this story, it is hoped that you reach out to someone you love working with and remind them how thankful you truly are for having them in your life. For more information or to contact Drs. Johnson and Knopf, please feel free to email them at:

kejohnson@stcloudstate.edu and ahknopf@stcloudstate.edu

*Registration for the ABILITY Event may be found at www.scsutraining.com/ability.

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