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Avi Golden

Avi Golden

A stroke and aphasia survivor

Avi Golden, standing in front of a paramedic vehicle in his paramedic uniform and hat

Avi is a stroke and aphasia survivor. He was an New York City paramedic and about to start medical school when he had a stroke. Prior to his stroke, he loved many outdoor sports like horseback riding, kayaking, sailing, bicycle riding, snowboarding, etc. Now, post-stroke he has aphasia (difficulty communicating) and can’t use one arm, but still enjoys many of the same thrilling activities.

Avi completed his Bachelor of Science in Biology at Towson University, in Maryland, USA.

1. As someone with aphasia, what can you share about this condition that you think will help other people?

Everyone is different. For example, I have Broca’s aphasia. There’s also Global aphasia and Wernicke’s aphasia, and different levels of ability or difficulties that each person may have. Working hard with a Speech Language Pathologist is very important. It may take a long time to make progress.

2. What treatment program did you find most helpful in your particular case? 

I had individual therapy and then I also participated in a group. At first, I could only say the word “Michael”, and it’s funny now because I didn’t even know anyone named Michael! It’s important to socialize with others who have aphasia and have some fun, too. When a Speech Pathologist leads the group, the person with aphasia might not know they are working on communications skills when they are in that group.

3. What advice would you give someone with severe aphasia? Don’t give up.

There are alternate ways to communicate if speech is very difficult. You need to trust your Speech-Language Pathologist and work with them.

4. What advice would you give family members of someone with aphasia?

Families need to learn some of the best ways to help out a person with aphasia. Sometimes waiting without filling in words for them is better. The Speech Pathologist can give the best advice for each person.

5. How does aphasia affect your daily life right now and what technologies do you find most helpful, if any? 

I have some trouble with writing. I use speech-to-text dictation software. My cell phone is a great help. When I can, I go speak to groups along with a Speech Pathologist. I have a PowerPoint presentation, and it includes pictures of me doing sports and activities you might not expect.

6. As an aphasia advocate, what improvements would you like to see in the health care system in your country?

It is important to educate people, especially first responders, so they can have an idea of what to expect when they see a person who has aphasia in a medical emergency. The National Aphasia Association says that about 1/3 of all strokes result in aphasia. There are 2 million people in America who have aphasia, but many people never even heard of it.

7. What are the common misconceptions people have about stroke patients with aphasia?

It is not a loss of intelligence. It is a problem communicating, and people can be helped even 10 years after they first were diagnosed. Recovery and progress is different for a younger person than an older person.

There are new studies showing that the brain can make new networks and heal, which can improve the communication ability of a person with aphasia.

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Katy Neas: She can teach us all a thing or two

Katy Neas: She can teach us all a thing or two!

Spanning a powerful 30 year career, Katy Neas, the Deputy Assistant Secretary at the Office of Special Education and Rehabilitative Services (United States Department of Education), works tirelessly as she continues her plan to create a clear and strong support system for children, families, teachers, and all those involved in the education of students with and without disabilities. Using her passion and drive, along with the experience and skills she gained from her early career in Senator Harkin’s office, Easterseals, and the Physical Therapy Association, Katy is a catalyst in the world of education.

Katy Neas, a smiling Caucasian woman with brown hair.

Can you share with me a bit about your family and where you grew up? What college did you attend and what was your choice of study?

“I grew up in Des Moines, Iowa. I am the middle child. I have two brothers. I had a sister who died before I was born who had multiple significant disabilities. When I was younger, my parents talked about her infrequently. Once I joined this field, I’ve learned a lot more about what her life was like, being medically fragile [and] what that was like from my parent’s perspective, my mother’s perspective, mostly. Being a family was very important to them. And there were things that we did because we were a family that was sort of the rule…why were we doing this? Well, we do this because we’re a family. That certainly was a big part of shaping me in terms of my view. Family’s always been the most important thing to me. My family is not just my biological family. I grew up in the family I’ve created but certainly the family of people I’ve gotten to know over the course of my career.

When I was in high school, one of my best friends committed suicide. It really rocked my world in a way, changing my perspective of needing to help people and wanting to not stand back on the sidelines, watching terrible things happen when maybe I could do something to alter that course. I certainly didn’t sort of sit down and say, “I’m going to channel this pain into something good.” It is just something that happened over time.

My older brother got into Georgetown. We would visit him in Washington. I thought Washington was probably the coolest place you could ever be. There was a Georgetown alumni representative in Des Moines and I had met with her several times. She suggested I apply to the School of Language and Linguistics. When you apply to the language school, you apply to a specific language. So I checked the box that said Chinese – having never studied Chinese because it was a good strategy for getting in.

so I got the letter, “Dear Miss Beh, [we are] happy to [accept you].” [When I got there] I did nothing but study. I’d go out Friday night and then I’d study all day Saturday and Sunday because I had to test every Monday morning in Chinese. I decided that studying 24 hours on the weekend was not how I wanted to spend my entire college career, so long story short, I switched majors and ended up leaving Georgetown with a French degree with a minor in economics. I was kind of a lost soul in the sense that I didn’t really know what I wanted to do when I grew up.

Do you think your time at Georgetown helped you prepare to be an advocate for the community?

I got an internship with my congressman, who was running for Senate. When I got to his office, I finally felt like I belong[ed] somewhere. It [was] like, this feels good, I like these people [and] this work. They were fun and dedicated Iowans. It was the first time in my Georgetown career that I was like, I could do this. I liked it so much that I ended up working two days a week.

I graduated at the end of May 1985 and started working in the senator’s office in July as the receptionist. Ten hours a day I answered the telephone. It was absolutely fascinating because it was during the middle of a farmer crisis. We talked to desperate farmers all day long, or old[er] people who just needed somebody to talk to. It was a great learning experience.

By the time 1987 came along, Senator Harkin was chair of the Subcommittee on The Handicapped. We changed the name to the Subcommittee on Disability Policy. Senator Harkin was the Chief Sponsor of the Americans with Disabilities Act. I was back up staff to Bobby Silverstein, our staff director. That was certainly an experience of a lifetime, to be able to work on culture-bearing change. I got to meet all the different aspects of the disability community. I met with lots of different people within the business community.

When I left Capitol Hill, I had a series of jobs. The most profound one was working at Easterseals where I was for almost 23 years, and I did public policy on behalf of kids with disabilities and their families, early education, K-12. Over the course of those 23 years, I went from one of the lobbyists to running the office.

Had I not had that job on the Hill, I never would have been at Easterseals. And if I hadn’t been in Easterseals, I would never be here. I [have] been very lucky for a clueless kid who didn’t know what she wanted to do when she was in college. I’ve been really lucky to have this magnificent career and meet these wonderful people and have the opportunity to serve. It’s not by my own design, it’s all been serendipity.

How did you prepare to start working in the Department of Education?

My husband was very sick in 2018 and 2019 while I was working for the American Physical Therapy Association. I had left Easterseals, my daughter had gone off to college, and it was time to try something new. I am grateful beyond words for my time with the American Physical Therapy Association. When the pandemic hit, it made me think about what it is that I really want to do between Ralph’s illness and the pandemic. I was getting restless and wanted to do something to serve. I had always been a Joe Biden fan. In fact, before the pandemic, I took my mom to the Iowa Caucus so she could caucus for Biden. I believed then, and believe now, that he was the person with the right temperament for what our country needs right now. So, I started talking to people who were involved in the campaign saying, “What would you think if I wanted to work for the Department of Education?” I got some positive feedback. Then it became clear that Biden would be the next president. I think for me, what was most attractive was that I had spent all this time working, mostly at Easter Seals, to see how the policies we write in Washington are actually implemented when real people are involved and what needs to happen for the policy to be meaningful.

I have helped shape the policy of the federal law, but I also was able to learn from the Easterseals affiliates that made it real for kids and families. My time at the US Department of Education is a great way to have this next chapter of my career. [The pandemic] has taken a huge toll not only on kids and families but on school systems, people who work in schools. [It] made me realize how vulnerable the whole education system is for everybody. To be a part of a group of people that wants to try to help is an honor. I feel like my whole career has prepared me for this moment. I feel the folks that I get to work with every day are just magnificent; the career staff, the political staff, the Secretary, are very invested in helping schools be open and safe and a place where kids are learning. I’ve kind of been doing this for 30 years. Again, I feel very honored to have this opportunity.

Are there any projects upcoming, or projects that you’ve worked on that you would consider major accomplishments in your career?

One of the things that is thrilling for me right now is being a part of the President’s Build-Back Better Initiative [which] includes some historic investments in childcare and preschool services. When I was at Easterseals, we helped create an inclusive child care model program because many families with kids with disabilities couldn’t find childcare to save their souls. There were childcare programs that were too afraid to take a kid with a disability. There were very few options. So we chose to create a new program. If we can’t find it, let’s build it ourselves. This model program has grown over the years. We now have this opportunity with the President’s Build Back Better Initiative, where we are going to be able to increase not only the amount of childcare, but the quality of childcare so all kids can get an appropriate early education experience, whether in a childcare setting, or in a preschool setting. The way the program has been designed with my colleagues at the Department of Health, Human Services, and the Department of Education, [is] to be inclusive of children with disabilities from the start, not as an afterthought. They’re not an add-on. It’s how we do this right from day one.

I’ve been working on inclusive early education for at least 20 years. And to see that, knowing that I have shaped the dialogue that has helped inform where we are today. When the President’s proposal in Congress hopefully [gets] approved, what that will mean for kids and working families is just mind-blowing. I’m very hopeful that the President’s plan will become law, and we can start really working on making this real.

What are your future plans? What do you think the Department of Education in terms of serving people with disabilities, or creating more innovation or technology, will look like?

The Department has a role to monitor how states oversee the implementation of the Federal Special Education Law. We are in the process of ramping up our monitoring so that states know they have a partner with us, but we expect them to meet the letter in the spirit of the law. Similarly, the Department and office I work in oversee the Vocational Rehabilitation Program, helping adults with disabilities get trained and placed in jobs appropriate for them. This is a place where we know we’ve got a lot of room for more innovation. It’s something I’m really looking forward to digging into, in how we support the Rehabilitation Agencies to have more success in helping people be employed in their communities doing things that fit their skills.

One of the reasons I’m such a huge early education advocate is because I have seen over the course of my career the different skill sets of someone who had access to early intervention, [versus] those that didn’t. By having that delay, not getting services until the K-12 world, [is] a disservice and makes it more difficult to catch up. The more we invest in early education, the better outcomes we’re going to have in employment when people leave high school or whatever it is that’s right for them. All learning really does begin at birth, and we need to support families to help them on their journey so that everybody can have the life that they want.

What do you think are the biggest misconceptions about people who have a disability? How do you think we can, as a society and the people working in your field, change that?

Stigma, low expectations, and not seeing people as people first. There’s a place for all of us. I think one benefit of working in the disability community, as long as I have, is that everybody can make a contribution. Everybody can be successful in the community. Certainly, physical access with curb cuts and electric doors makes everybody’s life easier and is beneficial, but we haven’t really realized the benefit from an employment perspective. I think in a twisted way the pandemic has opened new opportunities. We’re doing things today, [where] we don’t have to physically be together to have this conversation. You don’t have to have somebody in the office to do that job. I’m hoping that the creativity that was forced on us because of the pandemic will change our perspective of who can do what, and that we can continue to have that creativity applied to new industries so that more people can have more choices on what’s right for them.

The other thing that I think is going to make a big difference is the bill that the President is signing today, the Infrastructure Bill, where green jobs, roads and bridges, [and] all of those things are going to be jobs with different layers to them. Not everybody needs to be the engineer. Somebody needs to be the guy that plants the tree, right? These jobs are going to have such a wide range of goals resulting in the creation of new jobs for people with different skill sets. I’m very hopeful that this is really a major turn in our employment opportunities for people with disabilities.

Why do you think it’s important for society to consider inclusion and inclusivity when thinking about jobs or leadership roles, and companies hiring people?

As an able-bodied middle-class, white woman, over 50, I have learned in my career that we are individually better off when we can collaborate with someone who is different from us. Hands down, no contest. We all bring the stories of our upbringing with us, we all have different experiences that shape us. I think having genuine, authentic experiences shaped how we make policy, how we think about the implementation of policy. Without that diversity, the policy just isn’t that good. It’s not as good as if it was informed by these different perspectives.

Who has been your role model or inspiration throughout your career? Has anyone shaped you or guided you in the work that you have been a part of?

There have been a number of both personal and professional role models. Certainly, Senator Harkin helped launch me and without him, I wouldn’t be sitting here. I’m just profoundly grateful for the opportunity to have been able to learn so much [from him]. When I worked in the Senate, Bobby Silverstein was my boss, and now my dear friend. One of the things Bobby taught me was you can never be over-prepared, do your homework, and always treat people with respect.

My parents and especially my mother [too] who just turned 90. She’s had some health challenges and just moved into assisted living. Her vision and hearing are not great now and she’s now walking with a walker. But man, she has rolled with what life has thrown at her and [has] always come out with her head up and lipstick on. She is creative and smart, there’s not anything she couldn’t do. Her confidence in who she is and her personal strength are things that make me proud of her every day. She’s been an awesome role model over these 58 years.

Is there anything else that you want people to know about your work on behalf of people with disabilities in the Department of Education?

I’m so lucky to be able to work for Secretary Cardona and President Biden, I really think that this Administration wants to partner with all Americans to try to make things better. When the President discusses Build Back Better, he really means it. Our schools get to have the support that they need. So teachers are adequately supported, both financially and with resources where kids and families feel like school and their communities are a place that welcomes them. To be a part of that strong desire to help Americans and especially Americans with young children have the opportunities that they want for themselves so that their children can grow up and be productive contributors to their community.

We are all one-car accident or one major health crisis away from needing those supports ourselves, and you never know when you’re going to need them. I think we as neighbors, friends and their families, need to help create that community where everybody can be successful.

How do we create a foundation, so people can soar and people can do what they want to do, and have the opportunity to figure it out, and then to act on what it is that they want to do? I think that’s part of our role here at the Department is to create those support systems. That’s what I’m hoping we can do over the next four to eight years. That’s what gets me out of bed in the morning – how can we make the system strong so everybody can be successful?

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Autistic self-taught artist and designer

WAGS of SCI Wives and girlfriends of spinal cord injury

Support entrepreneurs with disabilities

A young with a ring in her nose and purple hair, smiling and showing her colourful stickers which she made for sale on Etsy

Margaux Wosk (they/them) is an autistic self-taught artist and designer as well as an activist and advocate for people with disabilities. They fight really hard for those who own their own business so that these entrepreneurs are able to have the same rights and benefits that are available through organizations that hire people with disabilities.

They also engage in public speaking and through everything they do, passionately strive to break down barriers that exist as it relates to what is generally believed autistic and people with disabilities are capable of doing. Margaux owns an online store on Etsy.

“My online store is reflective of who I am and I use bright colours and creative, cute imagery. I offer autistic and neurodiversity pride items as well as a wide variety of things: patches, stickers and so much more.”

Their artist pseudo name is Retrophiliac which means lover of past things. “I am very inspired by the 60s, 70s, 80s and 90s and it is reflected in all of my work and even my personal style. I came to make a change for many people are not just myself. I find strength in my work and the overlap of my activism, advocacy and art.” ~ Margaux Wosk
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Wives & girlfriends of spinal cord injury

WAGS of SCI Wives and girlfriends of spinal cord injury

Brooke & Elena gives us a peek into their world

Two smiling women, sitting on the front steps of a house

Brooke Pagé and Elena Pauly of Vancouver, BC, started the Wives and Girlfriends of Spinal Cord Injury (WAGS of SCI) group after becoming caregivers for their partners, both of whom are quadriplegic. In 2014, Evan, Brooke’s boyfriend at the time, got injured at work when a load of unsecured flooring fell on his head, breaking his neck. After the injury, the couple married in 2016 and Brooke is now his full-time caregiver. Elena’s boyfriend, Dan, became severely injured in 2016 after jumping into a shallow pool while both were on vacation in Cuba.

WAGS of SCI began as a meetup and support group exclusively for wives and girlfriends of men who have sustained a spinal cord injury. Although their lives of both women have changed dramatically since their partner’s life-altering injuries, they remain resolutely by their side, showering them with love and support, while through their support group, encouraging other women caring for their partners with spinal cord injuries to do the same.

During the insightful hour-long video Conversation, their frustration with the government funding process connected to home health care and the need for more free mental health support were passionately discussed. It quickly became evident that their support group provides significant help to many other women in similar situations

and through their on-going interaction, they are able to share coping mechanisms.
One of the more frequently asked questions is whether sex with their partner is still possible and the answer is “yes.” It may take a different form for different people, but it can be done, they shared. Sometimes it looks a little different from traditional sex… “but there are so many options.”

Even with government support, the women say caregiver services are far from satisfactory and Brooke had endured “terrible experiences.” Some caregivers would show up late and one missed 82 shifts! Brooke shared. “….she said she was coming to the house but I was doing all the work and she was getting paid for those 82 shifts.” Elena adds, “Not everyone who is in the field should be in the field.” And the reasons for the poor service? Brooke feels that it is because “caregivers are overworked and underpaid” and have too many clients to handle to provide proper care. Elena echoes a similar sentiment stating that caregivers often didn’t show up so she had to fill in for them.

Both Elena and Brooke said they had to learn how to “share their space” with daily caregivers, but Elena admits that the “hour and a half in the morning” when they are in the house assisting her partner, this allows her the chance to do dishes, take the dog out for a walk, and get other things done. Elena says it has “taken them a while to find the right caregivers.”
At one point during the Conversation, Sophia asks the two women about their feelings as it relates to the role they now play as opposed to the one they played before their partners injury. “We love our partners” was the immediate reply. Elena says in the beginning she was beset with thoughts of “Why me?”, but has now adjusted to the new normal. “I kind of forget that Dan’s in a wheelchair” she says. Brooke adds that although some wives and girlfriends may find it difficult to accept the new reality of their partners with spinal cord injuries, she never considered any other option but to be with her partner and care for him. “I love this person,” she says, “I believe this was put in our lives for a reason.”

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Let’s Talk Dementia Awareness

Let’s Talk … Dementia Awareness with Rianna Patterson

Rianna Patterson is a personal development coach, TEDx speaker founder of a youth-led dementia charity called Dominica Dementia Foundation which
she launched when she was 18, in memory of her grandfather. She is also the film director of
Dementia: The Island Journey film, a documentary on dementia in the Caribbean

Head shot of a smiling black lady wearing an aqua jacket

This is an important time for Dementia advocacy. As COVID-19 has become a global health priority, other health diseases such as cancer and dementia have been highlighted in the media. This is a cause for concern. As information needs to be disseminated to families and caretakers, the work has only increased since COVID-19.

Inclusion of older people in all aspects of governance is a key action to ensure that policies are developed and acted on for the greater good of vulnerable communities. Funding for dementia organisations is also imperative to ensure community groups have accessible funding to continue their projects for care homes and older people. Most were isolated during this time, which resulted in lack of human interaction.

There needs to be more support for creative engagement programmes that connect older people with the world around them, to improve their mood and quality of life.

Another area where people with dementia need to be amplified is through the media. We are consuming more social media content like never before. It is important that older people are celebrated and are shown in their truest form. An older man on a wheelchair is not the only indication of an older person, we are living in an aging population but a very lively one. We have a lot of people who are living well with dementia. Stories of hope are important to tell because it provides real hope for families who have someone with dementia.

It continues the conversation of seeking therapy and working towards a dementia diagnosis and hopefully a cure one day.

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Let’s Talk Dwarfism Awareness

Let’s Talk … Dwarfism Awareness with Danielle Webb

“My journey of self-acceptance . . . in progress”

A smiling Danielle Webb

From a young age, I have clear memories of being shamed for my body image and size. From the innocence of my reception classmates saying I “looked funny” . . . to the 15-year-olds shouting “freak” down the secondary school corridors. Be it right or not, I guess you can say “I’m used to it”, so more times than not I brush it off… cold shoulder, because truthfully there are not enough hours in the day to give attention to every person who stares at you as you walk down the street, I’ve mastered the brave face. But that doesn’t mean I always want to use it and sometimes the armour you wear on the outside, cannot always protect you from the hurt it causes within.

Before the age of 13, no one mentioned my size. As far as I was concerned it was no more than a physical characteristic – and even then, I wished every day that it wasn’t. I tried to dismiss that it was even part of who I was at all. I was stuck in a trance of longing to be someone else, when truthfully all I really wanted, was to be ok with being me as I was. I spent a long time waiting for the day ‘it was ok’.

But something I’ve had to learn as I’ve got older. Is there is no real point where it suddenly all becomes ok. And accepting this is a hard pill to swallow.

From a secondary school teen, my mental health has been my demon-fed and fueled by a struggle to find acceptance of the path I was put on. Bullying was also a feeder of that demon – The opinions pressed on me by the wider world- often reformed themselves into my own self-doubts.

Age 15, whilst walking home one evening, I had abuse hurled at me, with cans and footballs thrown in my direction. I’ve had my face photoshopped on memes. I’ve been followed and filmed in the streets. Had my social media leaked onto “just for fun pages”. I’ve been called every name under the sun . . . Fat. Ugly. Freak. Monster. Been told that I should’ve been given up as a child. Some even going as far as telling me my existence on this planet isn’t worthy. And for what? Because I happen to be 1 metre shorter than the average adult, my life doesn’t hold as much value as if I happened to be 100cm taller?

I’m not going to bore you with the jargon and statistics behind my physique, but the simplest way to explain how my condition became a thing, can be done in two words. Genetic fluke.

Neither of my parents have the condition, nor have traces of the gene in their families. Therefore, it was a fluke. A chance. A coincidence. An accident if you will…… whatever you wish to describe it as, no one held any responsibility for it. No one has any control over it. I certainly didn’t choose it.

Yet I’ve had to learn to be ok with its consequences.

So, you know what – I’m entitled to feel a bit pants someday.

But then other days. Most days…it is ok.

Like today. Writing this. I’m ok.

But that doesn’t mean today is any more of an achievement to last week when I screamed for my doctor to make it stop.

The truth is we don’t always have to be ok with the things that cause us hurt. We don’t have to be ok with feeling pained. We don’t have to put on a brave face every day and always be used to it – Someday its more than ok to hold our hands up and say you know what- this sucks! But something else I’ve learned over time, is in the moments of denial . . . the times where we least accept what is in front of us . . . all we really do is add to the fire that we are trying to put out.

What I mean is. On the days, I hear the shouts on the street. Or the days social media tells me I’m unworthy; where am I getting if I allow myself to repeat those same words and feelings to myself?

Well, I can tell you from experience – it’s nowhere nice.

We spend every waking minute with ourselves – and in time I’ve began to realise that for that reason- my own outlook on myself is probably more important than the satisfaction of an online troll, who probably couldn’t even tell you my name.

It would be easy to be bitter. As bitter as the world that surrounds us… And believe me, those feelings don’t go unseen. I’ve cried for days. Prayed for days. I’ve begged doctors to “take it away”, but all the time knowing nothing is going too. This is my card. And it’s mine to accept.

But you know what else I’ve learned?

Accepting your disability isn’t just a switch you can flick. There are days where you feel so confident and nothing can stop you, and days when someone who probably isn’t even looking at you can send you on a downward spiral.





I named this column “My journey of self-acceptance . . . in progress


Because I’m still on it. I’m still learning everyday – and I’m equally making mistakes and digging myself out of those downward spirals everyday too, but in making those, mistakes I’m finding in myself the strength to accept the things that part of me might still not be ok with.

Somedays I write columns.

Some days I present seminars.

Other days I don’t want to look in the mirror, but each of those days are part of the journey.

I don’t think I’ll ever be ok with being called names on the street – but to be ok with the body I am in, so that I learn to not believe them.

That’s where I want my journey to lead me.

That’s the path I am on.

A journey of self-acceptance . . . that continues to be a work in progress.

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The Shalva Band

The Shalva Band

By Shana Jones

Eight members of The Shalva Band stand together in a group photo

The Shalva Band, based in Israel, consists of members who represent a variety of intellectual developmental disabilities and physical impairments. The Band members’ disabilities include blindness, Down syndrome, and Williams syndrome.

The Shalva Band was established in 2005 and has been in existence for nearly sixteen years. It began when the director of the band, Shai Ben-Shushan suggested the idea to the founder of Shalva, Kalman Samuels. Shai did not have any previous involvement in the Shalva organization or working with people with disabilities; however, he, like the organization’s founder, had a personal promise to fulfill. In 2005 Shai had recently recovered from a serious injury from his service in one of the IDF’s elite units. He was injured in a complex military mission in which his commander was killed and several other soldiers were severely injured. Shai found himself undergoing several surgeries and rehabilitative treatments and personally struggling with the physical limitations that an individual with disabilities might experience. 

Once fully recovered, Shai decided that he would give back to the community by sharing his love and talent for music with children with disabilities.He formally began the Shalva Band as a component of Shalva’s music therapy program. Gradually, the band became an entity of its own and a social enterprise of the organization.
The Shalva Band hopes that with each performance the world will become a more accepting and inclusive place. By recognizing the Shalva Band’s ability to create beautiful and meaningful music, audiences are essentially realizing their own ability to regard people with disabilities as respected, equal, and contributing members of society. Here are comments from some band members:

Yosef Ovadia
Yosef (DRUMS):

For me, being a member of the Shalva Band is being part of a family. It is a source of pride. I love to play music and make other people happy. I really enjoy what I’m doing.

Tal Kima

The Shalva Band is like a family to me. We’ve been together for many years. I really enjoy playing music with the band and getting together with everyone.

Yair Pomburg

To me, the Shalva Band means friends for life; it’s good laughs, fun, and music. I love the other band members and enjoy being with them.

Sara (GUITAR):

The Shalva Band members are my best friends. They are with me in the good and the bad, on good days and on less good days. When we are all together it is extremely powerful and an inspiration to anyone who sees us.

The two vocalists, Anael Khalifa and Dina Samteh’s amazing voices brings listeners to tears during their performances. Here are their thoughts about being on stage and using their voice to inspire change while bringing to the forefront of people’s minds the fact that having a disability should not hinder you from pursuing your passion.


The Shalva Band is like a family to me. It is my second home. We are together a lot and being a member of the Shalva Band is like being a member of a family- with all of the emotions that it entails.

I love music and it is therapeutic for me; I feel that it protects me and saves me.

When I stand on stage in front of a large audience, my goal is to make people enjoy music and to be moved. If people see in me a meaningful message or a source of inspiration, I consider that to be very valuable.

Anael Khalifa


The Shalva Band is the center of my world. The band gives me lots of confidence, good friends, and family.

I really enjoy music because music allows me to experience different worlds, to be exposed, to be moved.

When I am standing on a stage before so many people I feel a very personal sense of pride. Everyone can achieve if he wills it- it’s not just a cliché. Everything is possible. This is exactly what happened to the Shalva Band.

The Shalva Band performs by invitation on stages across Israel and around the world. All of their performances are memorable but one in particular profoundly touched the hearts of listeners all over the world – their soulful, emotionally-stirring, unforgettable performance of A Million Dreams at Eurovision 2019.

To find out about upcoming performances, contact the band through their website or follow them on Facebook or Instagram.

The Shalva National Center

The Shalva National Center is one of the largest centers for disability care and inclusion in the world. The center was officially opened in September 2016 in response to a growing need for advanced rehabilitative services for individuals with disabilities and in recognition of Shalva’s pioneering program development in this field. The campus includes an expansive inclusive playground and a main building which is 200,000 square feet in size. Each of the eleven stories of the Shalva National Center serves Shalva’s different programs. As such, the center has some of the largest and most advanced disability accessible facilities; including an inclusive sports complex with a hydrotherapy swimming pool, a semi-Olympic swimming pool, gymnasium, and fitness room. The center also has facilities which are open to the public; such as an auditorium, seminar rooms, and a café. In addition to housing Shalva’s rehabilitative programs, the center is an inclusive workplace and adults with disabilities work in many of the facilities. The building was intentionally designed to serve as a natural hub of inclusive interaction which is manifest in the ongoing daily activities as well as the building’s unique and beautiful interior design. In times of national crisis, the Shalva National Center serves as Israel’s national emergency center for people with disabilities and can host up to 1,200 individuals in disability accessible safe rooms.

Shalva was founded in 1990 by Kalman and Malki Samuels, whose son, Yossi was rendered blind and deaf, among other challenges, following an injury during his early infancy. At the age of eight, Yossi experienced a communication breakthrough and the Samuels fulfilled their promise to help families with similar challenges by founding Shalva.

Upon the organization’s inception, Shalva’s original and mainstay program, the After School Activity Center, immediately filled a gaping void in rehabilitative opportunities for children with disabilities in Israel. Over the years, as the program developed to include individual and group therapies, summer camps, music bands, and sports teams; parallel respite and family support components became organizational staples as well.

Shalva continued to establish a host of early intervention rehabilitative and educational programs, offering a holistic continuum of disability services from infancy to adulthood. Shalva has been distinguished with several prizes and endorsements; including the Ruderman Prize for Inclusion, the President of Israel’s Prize for Excellence, and the Knesset Speaker’s Quality of Life Prize. In 2018, Shalva was awarded consultative status to the United Nations, distinguished to provide consultation and guidance on disability issues.

Shalva’s management standards continue to be recognized by the ISO 9001/2008 certification and Midot’s Seal for Outstanding Effectiveness. Through over thirty years of partnerships with government ministries, corporations, academic institutions, social development groups, and communities worldwide; Shalva continues to successfully infuse disability inclusion into public policy, cultural platforms, and social discourse.

Of the many programs and services offered, the most utilized is Shalva’s Me and My Mommy program, a unique early intervention program for infant with disabilities and their parents. The program provides rehabilitative therapies and support services to 120 new babies and their parents every year. While this is not Shalva’s largest program, it is the most utilized because people travel from across Israel to attend the program and the majority of infants born with Down syndrome in Israel every year begin their journey at Shalva.

The Shalva Band is a product of the Shalva organization. The Band members’ musical talents were discovered and developed within Shalva’s music therapy programs when they participated in Shalva’s rehabilitative programs as children. Today, the Shalva Band has a recording studio at the Shalva National Center where they often practice between performances.

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Keevin Jackson – “The Price of Love”

Keevin Jackson – “The Price of Love”

Keevin Jackson whose passion for music ministry supersedes his desire for anything else, is a full time worship minister and gospel artiste. He is driven by a spirit of excellence and is determined to reach and touch the hearts of men and women of different racial, cultural and social backgrounds with the gospel of Jesus Christ.

He is is known mainly for Contemporary and Reggae and is signed to the Jmuzik label. Keevin’s albums continue to make an impact in the Caribbean, North America, South America and Europe.

His latest release is a reggae song called ‘The Price of Love’. Keevin wrote this song while reflecting on the mercies of God and the price he paid for him. The song is a beautiful interaction between God and a broken child. It depicts the pursuit of Christ and the response of his children coming to accept that Jesus paid a great price to cover their sins.

The song was strategically released in the Christmas season to serve as a reminder of the reason for the season, but it is a song that holds true in any season.

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Marcela Marañon

Marcela Marañon

“I am beautiful the way I am”

Marcela, brown hair, sweater and black skirt and black boots, sitting on her wheelchair.

At 20 years old, a car accident resulted in Marcela Marañon being confined to a wheelchair, paralyzed from the waist down. Fast forward to today. The adult Marcela enjoys a very influential spot in the social media space. Her Instagram account, @thejourneyofabravewoman, which she started in 2017 “reflects my life,” Marcela said. “I feel really brave putting myself out there and doing things” but with 399,000 engaged followers, it is evident that her contribution is felt.

With a degree in communications which included taking social media classes, it was easy for Marcela to identify this medium as one worth using to spread her message. As she navigates her way through the social media biosphere, engaging with her audience and building a strong online community, followers respond positively to her posts, but Marcela admits that her presence on social media goes beyond just her travel adventures posts, fashion and clothing tips. She sees herself as a role model for women with a disability and also those without a disability. With her positive demeanour, she is empowering women to “go ahead and reach for the stars and to do whatever they want to do with their lives, regardless of their physical limitations.”

Through social media, Marcela touches the lives of many. She feels blessed by the positive feedback she receives and to realize that many are being helped by the content she posts. Comments from parents and little girls who reach out to her saying, “I have a disability and did not feel beautiful, but because of you, now I do,” gives her reason to continue along that Instagram journey. Each of her posts are accompanied by happy feelings as she knows at least one person will be helped as a result. Messages from people seeking advice on the clothing they should buy that will fit them well as a wheelchair user; questions about self-confidence, fashion and accessible travel – these make the time-consuming task of preparing Instagram content worthwhile. Marcela modestly says that she does not like to be called an influencer, but admits that some of her followers are indeed guided by the content she shares, some are inspired by it and based on the feedback she receives, can attribute some of the decisions taken by followers as having being influenced by her.

Marcela’s adventurous personality does not permit her to limit herself, so she frequently steps outside of her comfort zone and embarks on many journeys around the world. Travelling solo, she confidently visits countries with which she is unfamiliar, sometimes not even being able to speak the same language and oftentimes not being sure beforehand how accessible it will be. But as she checks a completed excursion off her list, it is done with a sense of satisfaction that another accomplishment has been achieved.

Although she has travelled to over 15 countries and experienced some amazing things, her most memorable is climbing Mount Kilimanjaro. “It was challenging mentally, physically and emotionally but it was a phenomenal experience because I never thought that as a person in a wheelchair, I would have been able to do this and I am very grateful for having had the opportunity to do it.” The team at Paratrek and their ingenious Trekker was her climbing aid and the euphoric feeling of getting to the top remains with her even today.

Exuding confidence as Marcela does is often not an easy feat. “Everyone has insecurities and so do I, but I do not allow it to show,” she shared. “People see confidence in your eyes,” she continued, “so I make sure that I maintain that confident feeling as much as I can.” She does admit that sometimes it is hard, and not being able to wear an item of clothing or a pair of shoes the way she would like to is bothersome, but that feeling is often just a fleeting one, quickly replaced by positive thoughts.

“I do not like to have people pitying me because of my disability.” Marcela continued, “I do not like to be treated as a person with a disability. Treat me like you would treat everyone else – like a person!” She worked in the health care industry for 10 years. Her employers knew her needs and met them. She was treated like a regular employee which she appreciated, and at no time was she made to feel any different from the able-bodied members of staff. This can happen in every workplace for other people with disabilities and she urges employers to seriously consider inclusive employment because people with disabilities are people first.

As the charismatic Marcela continues to give followers a peek into her world, companies are recognizing her impact and are capitalizing on her expansive reach to help spread their message. She is a global ambassador for several brands whose products are aimed at helping wheelchair users live full lives. One of these products is the Exoskeleton which she, as an ambassador, has been using as home therapy twice a week since 2014. She has the first unit created and wears it to stand and walk. Marcela enjoys the flexibility of having another mobility option, and her Instagram followers get an insight into a technology which they too can experience as a result of her making them aware of its positive impact on her life.

If you are a person with a disability and specifically a wheelchair user, Marcela says to you:

“Do not be afraid. It is important to live like if you do not have a disability. Do not limit yourself.”

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The Alinker: A Vehicle for Change

The Alinker: A Vehicle for Change

The word ‘Shalva’ means ‘peace of mind’ or ‘serenity’ in Hebrew.

Yellow three wheeled self-propelled walking bike, called the Alinker.

She says she’s not an activist, but I respectfully disagree. She has built schools in Afghanistan and taught carpentry to deaf children in Kenya. She challenges the refuge of comfort we tuck ourselves into by refusing a seat on the othering bandwagon. She personifies a fierce defiance of the mindsets driving the ism’s in society, choosing to see a single human race made up of diverse parts instead of different sub-elements struggling to co-exist. Yeah, I’d definitely call her an activist, and her current tool of activism is her revolutionary Alinker “walking bike” designed to re-imagine life for people using mobility devices (MD).

“Over my dead body will I ever use one of those things!”

The Alinker story started with these words uttered by Barbara Alink’s mother while on a trip to the market back in 2011. Noticing a group of elderly people happily chatting away in their scooters and wheelchairs, she inadvertently made a judgement about a group of people she could easily become a part of someday.

It was a moment of reckoning for Barbara, who had always been fueled by a passion for justice and inclusion. She believed strongly in the right to live and express life on one’s own terms, free from the constraints of society’s expectations. She was keenly aware, however, that some people, especially those needing mobility assistance, continued to be systemically “othered” by society and cut off from enjoying even life’s simple pleasures.

…for those who want to live despite mobility challenges.” Barbara set about designing a solution, knowing it would have to be something her mother would want to use. Enter the Alinker, a revolutionary non-motorized bike without pedals that enables the user to work leg muscles and be mobile while being seated. The device is built for 3 inseam ranges and is useful across a spectrum of activities: a young child with cerebral palsy stabilizes himself during a virtual exercise program, a lady with multiple sclerosis (MS) makes the short trip to the corner shop, and a Paralympian flies around a track in preparation for a marathon. The limits of the Alinker really are the limits of the user.

“A vehicle for change.” Beyond the obvious physical advantages of the Alinker, it addresses other deeper issues. On the surface, its value stems from the movement it allows users, because movement equals independence, which equals value, right? Of course. Less visible, however, is the social divide between those who need mobility devices and those who don’t: if you see me in a wheelchair and have to approach me, you probably feel a twinge (or more) of discomfort. In your mind, my immobility promptly groups me in a category of person unlike and therefore inaccessible to you. This mental sorting process is automatic, natural, and convenient. Human nature pushes you to protect your comfort zone, so in order to deal with the awkwardness, you will either subtly ignore me or display patronizing behaviour towards me. The Alinker addresses this by placing the user at eye-level with others (you’re perched on a seat as opposed to seated in a chair), which subtly but very powerfully makes the user more “accessible” to non-mobility device users. Additionally, the innovative design of the Alinker so captivates people seeing it for the first time that their curiosity overrides any discomfort about the person’s disability. The device then becomes a conversation starter and therefore a “bridge in the gap” between the MD user and non-MD user.

“A body is what we have, not who we are.” Alinker users the world over continues to bring this phrase to life in the way they “bridge gaps” and move through daily life. They fully embrace the idea that their immobility doesn’t define who they are; rather, it simply has to be worked into active engagement in all areas of life.

Prominent users include Colonel Carlo Calcagni, an Italian military officer-turned-Paralympian who recently completed the London marathon on his Alinker in just over 2 hours; Roxy Murray, a London-based fashion influencer, podcaster, and activist with MS who colour-codes her Alinker and other walking aids with outfits for her Instagram posts; and Selma Blair, an American actress recently diagnosed with MS for whom the Alinker has become “her way out again”.

“Together we move differently!” Making “her way out again” means Selma and other Alinker users regain access to the outside world and to a special community in which they thrive and inspire. The Alinker community promotes activity, awareness, and support among users as well as non-users through Facebook and Instagram groups, online networking/ information sessions, and exercise programs through the Alinker Academy. To address financial hurdles in purchasing a device, the company offers rent-to-own opportunities and crowdfunding programs through the Alinker site. The Race to Raise features Alinker record-setters running marathons, races and other events to support campaigns for others to get their devices; so far, 191 of the targeted 200 campaigns have been completed! This translates to “191 times more agency, belonging, [and] mobility”.

From the first Alinker deliveries to ecstatic customers, people previously marginalized by society have been re-imagining and re-purposing their lives.

Yet, for all its reach and impact, the Alinker represents only a single part of a greater company vision to provide access to community, mobility, and healthy food (the company recently opened an accessible farm in Kentucky, USA, where it employs Alinker users). When Barbara founded Alinker Inventions, Ltd. in 2012, she realized very quickly that it is first and foremost the access to these key resources that promotes a healthy, fulfilling life. Through innovation fuelled by a passion for justice and equality, the Alinker continues to offer access to such a life that is the birthright of all, regardless of mobility or other challenges.