I am a disabled activist and researcher born in Egypt, who lived through many barriers and deprivations that face disabled people in accessing basic services. At my segregated boarding school for blind students in Egypt, I gained many experiences of independence and how I could think of many creative solutions to overcome both the educational and social challenges that I faced during my educational life. The blind education system at that time had many problems, for example lack of tactile mapping or audio descriptions of the physical word. As a result of this we were not allowed to study geometry, shapes etc.
Despite this, I managed to reach and complete my undergraduate studies at an Egyptian university (English Department), where neither assistive technology nor personal assistant schemes were part of the higher education system. As a result, blind and physically impaired students faced various barriers, and deaf students were not even allowed to join higher education. This is not even to mention our difficulty of being included in university life at a social level. It’s also worth mentioning that I was denied access to join the media and communications department and the Arabic Music Institute due to my impairments, despite being qualified for both of these. This was especially frustrating as I played keyboard in bands in Egypt from the age of 18 (a story that I would love to share in another blog post).
Starting in 2004 I worked in the field of disability for over ten years, joining the National Council for Childhood and Motherhood – both policy making organisations. Through various scholarships I was accepted to travel widely to continue my academic career (MA and PhD in Disability Studies) and to take part in academic conferences, fellowships and disability activism over the globe. My MA was the first time for me to travel outside of Egypt, an interesting and challenging experience as a blind person that I will definitely share in future. In 2011 I lived through the events and consequences of the Egyptian revolution, where we, disabled people, fought for inclusion by participating in marches and demonstrations. Immediately after the revolution, I was engaged in the creation of many national discourses e.g the Egyptian Constitution of 2014 and new Egyptian disability law. In addition to these, being a member of many global alliances of the disability movement assisted me to become more involved with disability challenges at the global level.
This also showed me the large gap between the barriers faced by disabled people in the Global South and Global North. The aim of this blog is for disabled people from both continents to share and debate these differences in barriers.
This may help to structure a more unified global activism, merging different disability movements together and providing solutions towards more inclusivity and equality for disabled people. Although this blog is not purely academic, it will learn from the academic world, which I currently work in, and this may lead to further research and encourage scholars to consider disabling barriers across borders.
My story is indicative of many of the barriers that I have no doubt that other disabled people across the world, may have faced. The upcoming blog entries will contain a focus on each of these barriers, which will be enriched by your opinions and experiences.
Recently Sian Tesni, Senior Education Advisor at CBM, and I had the fantastic opportunity to meet with deaf leaders in Vietnam. We met with dynamic leaders, Ling from Hanoi and Huong from Ho Chi Minh City. We were able to learn some history of the Deaf community and also the myriad barriers deaf and hard of hearing encounter in Vietnam. The following is a summary of what we learned, which is only a glimpse of this rich culture. We hope to work more with this community in the future.
The first deaf school in the country was established in 1886 in the South of Vietnam. At the end of the war in Vietnam in 1976, the first school for deaf children was established in the north in Haiphong City with the fist school for deaf children in Hanoi established the following year in 1977. These schools used sign language indeed sign language was used in schools for deaf children throughout Vietnam. In 1990 Dutch missionaries arrived in Vietnam and spread the oral method of educating deaf children, which spread throughout the country and consequently removing sign language as a primary source of communication.
In 2000 Professor James Woodward established a sign language program in Vietnam with the support of the Nippon Foundation. He was director of the project “Opening University Education to Deaf People in Viet Nam” at the Dong Nai Provincial Department of Education and Training. This program brought back sign language use in Vietnam and provided opportunities for empowerment for deaf leaders such as Lin. In 2001, Lin left the oral school where he was a student and instead attended Woodward’s sign language program. Since then, Lin has become a formidable leader in the Deaf community. Lin empowers other deaf leaders as well, such as Huong whom he met and to whom he taught sign language. Now she is another empowered deaf leader in Ho Chi Minh City.
Currently there are 100 schools for deaf children in the country and 27 deaf students have graduated with a college or university degree. There are currently three deaf teachers in Hanoi and two in Dan Nang.
Currently there are 100 schools for deaf children in Vietnam and 27 deaf students have graduated with a college or university degree. There are currently three deaf teachers in Hanoi and two in Dan Nang.
There are many barriers for deaf and hard of hearing people to have equal access into Vietnamese society. There is lack of access to information. In the entire country there are only 10 sign language interpreters, and all are unpaid, as the government does not provide these services or fund interpreters. In addition, as of yet, there is no formal sign language interpreting program and Vietnamese Sign Language is not recognized by the government. There are no interpreters or closed captions on television, no interpreters in universities, or for public services, including healthcare services.
Not having interpreters in medical settings leads to lack of access to important healthcare information. This can be a frightening situation to be in. One example given was that a deaf couple went to the doctor for a routine checkup since the woman was pregnant. The healthcare personnel thought she was there to get an abortion instead. Fortunately the couple realized this grave error in time and received the appropriate healthcare attention they wanted.
In addition, deaf people are not permitted to get driver’s licenses, which creates another barrier and deprives and restricts access to essential services, employment and social opportunities. The World Federation of the Deaf (2016) indicates that deafness does not in any way limit a person’s ability to drive a car or other vehicles. Globally, there are no known reports that deaf drivers are a threat to other road users or that they are involved in more traffic accidents or injuries than the general population. On the contrary, according to studies, deaf drivers are involved in fewer car accidents than the average driver.
A Global Celebration – Let’s Light USA Purple in Celebration of “International Day of Persons with Disabilities”
(IDPD) 2018 on Dec 3, 2018
By Debra Ruh
The American author Alice Walker instructed us well in her classic novel, “The Color Purple”. Forgive the language, but it gives persuasive punch and power to her words:
“I think it pisses God off if you walk by the color purple in a field somewhere and don’t notice it. People think pleasing God is all God cares about. But any fool living in the world can see it always trying to please us back.”
That’s how it is with purple, a hue that communicates royalty, majesty, and power.
And that is what brings us to the #PurpleLightUp movement, a global call to action that demands that the voices of all people around the world be heard, specifically people with disabilities and their inclusion in the workforce.
Consider these numbers:
First, more than 160 countries have signed the Convention on the Rights of People with Disabilities. True inclusion means a world that accepts all human differences.
Over one billion people in the world have a disability. Some are noticeable. Wheelchairs. Crutches. Red-tipped canes. Others, not so much. One in seven people has a disability.
And of that billion, many are ready, able and hungry to work, to earn a living for their families and to make a difference in their communities.
The unemployment numbers among persons with disabilities who want to contribute are Data on unemployment around the world is difficult to come by, but according to the United Nations, 80 to 90 percent of persons of working age in developing countries are unemployed. In the developed world, that number is between 50 and 70 percent. Plus, many persons with disabilities that are employed are underemployed.
In the developed world, the official unemployment rate among people of working age who want to work and are trying to land a job is at least twice that of those who are not disabled. According to the United States Bureau of Labor Statistics, data released in June showed that while the unemployment rate among the non-disabled in the country was 4.2 percent, the rate among persons with disabilities seeking employment was 9.2 percent. As job growth continued through the rest of the summer, the unemployment rate for persons with disabilities remained at double that of the non-disabled workforce.
You get the point.
Those numbers, though troubling, help tell the story of why the #PurpleLightUp movement matters so much. It’s a network of disability confident employees, networks, allies and champions driving business change on disability from the inside out. The goal? To increase global acceptance of the disabled in the workforce, which has been a historically-untapped resource for the economy.
In short, it’s a revolution, and it is an exciting time to have the United States join in these Global Celebrations.
Julian John, Managing Director of Delsion, a people and development consultancy that focuses on supporting organizations around Learning & Development and Inclusion. Delsion has a social goal of: “Making Wales a leading nation for inclusion in the workplace, specifically around disability.”
Mr. John is one of the Ambassadors of #PurpleLightUp and has worked for a quarter-century in senior-level human resources. In an HR role, his credo has always been “People Are People; Talent is Talent and Potential is Potential.”
He’s always worked to bring the disabled into the workforce at every level. But since becoming disabled himself, that commitment has intensified, underpinning his support and involvement in helping to raise awareness of the #PurpleLightUp movement.
“I’ve realized the added power behind this message and the opportunities that lie within recognizing and celebrating the contribution that people with disabilities make not only to the economy but in the workplace,” he said. “The #PurpleLightUp encapsulates the engagement, drive, and resourcefulness that typifies the inclusion of people with disabilities within any organization.”
Kate Nash, OBE, agrees. #PurpleLightUp has captured the imagination of disabled employees and their firms across the globe, she said. Nash is the founder of PurpleSpace.org, the world’s only networking and professional development hub for disabled employees, network and resource group leaders, allies and champions across all sectors and trades.
Nash is also the creator of #PurpleLightUp and is focused on creating international unity among the disabled, celebrating the talents and economic contributions made by the disabled community around the globe.
“#PurpleLightUp has captured the imagination of employees with disabilities and the organizations they work for, the world over,” she said.
But beyond imagination, #PurpleLightUp gives identity to a dream that Sarah Simcoe, the Design & Engagement Lead of the movement shares with millions. Simcoe is a Senior Associate Consultant at PurpleSpace and formerly a leader of the transformation, responsible business, and networkology at Fujitsu.
“Mine is of a world where everyone is fully included and celebrated, a world that embraces human potential,” Simcoe said. #PurpleLightUp powered by PurpleSpace is leading the way in helping that dream come true. This transformative movement brings together disabled employee networks, champions, allies, movers, shakers and visionaries in unifying the voices of the disabled community – the aim being to create a global community of change agents that celebrate purple talent and the contribution we make day in day out around the world, a community that like a pebble in the pond, creates a ripple effect of positive change.”
On December 3, #PurpleLightUp will be celebrated around the world, an opportunity to point to the many contributions disabled people across the world make in a variety of fields. The world knows well the mark that Helen Keller, Stevie Wonder, Stephen Hawking, Franklin Roosevelt, and Itzhak Perlman have made. But there are many, many more stories to tell, of disabled people who are quietly, yet powerfully impacting business, government and the arts and sciences.
But more than that, #PurpleLightUp should illuminate towering skyscrapers and simple storefronts from Wall Street to Main Street and houses from your front porch to the White House, it should be a time of self-examination and the development of a strategy to stop employment and economic discrimination against the disabled around the world.
Symbols pack power. But without action, they mean nothing, sound, and color signifying nothing. And as a global leader, it’s time for the United States to join with the rest of the world to seriously bring the disabled into the drive for inclusion. #PurpleLightUp can be a force for growth and for good.
Taking Alice Walker’s words, a step further, let’s do more than use and notice the color purple. It’s time to act, to light it up and make a difference in the world.
The late Robert Kennedy spoke of “taming the savageness of man,” and “making gentle the life of the world.”
He also said something that fits for us in the disability rights community and across the world, especially these days when society is ripe for action.
“The glory of justice and the majesty of law are created not just by the Constitution, nor by the courts, nor by the officers of the law, nor by the lawyers, but by the men and women who constitute our society, who are the protectors of the law as they are themselves protected by the law.”
As an international disability advocate and a business owner, that’s my mission. Make it yours. Through being agents of change, we can create the glory of justice and the majesty of the law. Such is fitting for the color purple.
We have many great organizations already committed to going purple, including Fujitsu Global, EY, Santander, Tesco, Isobel Creative, KPMG UK, PwC UK, Allegis Global Solutions (and many more!). A number of universities have also stepped up along with iconic buildings from around the world lighting up and shining purple from Leeds in the UK to Toronto in Canada – it truly is a global campaign; it’s really easy to be part of going Purple!
If you want to become engaged in the spirit of the day and organize your own local #purpleightUp event, here is a link to some creative ideas that can fit all budgets and organization sizes: https://www.purplespace.org/purple-light-up/go-purple
Remember Nike’s drive to become an international brand in the 1980s that featured Michael Jordan and director Spike Lee (as the unforgettable Mars Blackmon)? The message was simple; Be Like Mike.
On Saturday –fittingly World Cerebral Palsy Day — the wildly popular athletic apparel giant offered a new message, a giant milestone in the global brand’s movement for inclusion; Be Like Justin.
But who is Justin? “Justin” is Justin Gallegos, a student at the University of Oregon and a member of the school’s running club. Nike signed Gallegos, who has cerebral palsy, to a three-year professional contract. This three-year deal means that Justin Gallegos joins Michael Jordan, Serena Williams, Tiger Woods and other great athletes, as Nike brand ambassadors.
If you’ve seen the video on YouTube when Justin was met at the end of a routine run and informed of the deal by a Nike official in front of his teammates, you can see what a powerful game changer this is in major brand’s movement for inclusion.
Justin wept.
We in this community who saw the viral video all over social media cried with him and cheered.
Justin wept.
We in this community who saw the viral video all over social media cried with him and cheered.
https://www.youtube.com/watch?v=P5du-U-i_do
Adweek offered another aspect to the Gallegos story that may be even more important than Nike recognizing a great athlete who happens to have cerebral palsy. (Note to the media: Justin Gallegos is not a “disabled athlete,” but an athlete who happens to have a disability. Put the people first, not their disability, there is a difference).
Sports Illustrated reported that Justin Gallegos has already jumped in and is at work with Nike in developing a new running shoe named the Pegasus 35 FlyEase. This is footwear specifically designed for runners with disabilities. You see, runners with cerebral palsy have a unique gait. This new shoe is designed with that in mind, along with a zipper on the back to make it easier to get the shoes on and off.
Nike’s new message proves that Phil Knight’s company understands that persons with physical disabilities are an untapped consumer market for multinational brands and that these individuals are full members of society who earn a paycheck, pay taxes, raise families and contribute to life in the world around us, through all their activities both personally and professionally.
They are also athletes and fierce competitors who sweat, win and lose but always strive. They give it their all and expect no mercy. While their actions can be inspiring, their purpose is not to inspire. Their primary goal is competition, teamwork, and success – the goals of all of us as individuals and businesses.
Of course, it is true Justin Gallegos is not the first athlete with a physical challenge to make a mark. In 1970, the New Orleans Saints’ Tom Dempsey kicked what was then the NFL record for the longest field goal, despite his deformed foot and hand.
Blind snapper Jake Olson made his mark on special teams for the University of Southern California Trojans, one of college football’s signature programs.
And Shaquem Griffin, despite having only one arm, earned a spot on the Seattle Seahawks roster, after wowing scouts at the NFL Combine.
There are countless more anonymous individual athletes with disabilities who have competed over the years, out of the spotlight, just for the joy of their effort.
There is no pity wanted here, only the opportunity for the persons with disabilities community to be welcomed in the locker room, the classroom, or the boardroom.
Justin Gallegos and Nike are loud and clear when it comes to their message.
The large multinational brands may be thinking more about bringing persons with disability into their marketing. Brand inclusion is now becoming more recognized as a very import corporate marketing strategy. We have come a long way, think about the Nike ads from decades ago, the ones that said, “It’s gotta be the shoes.” It’s not the shoes. It’s the mind and heart that matter. Bottom line? All people matter.
Featured on Runway of Dreams in the New york Fashion Week
Sara Ruh, our Chief Inspiration Officer, always wanted to be a model, and now thanks to the fantastic Runway of Dreams Foundation and Mindy Menkowitz Schier the founder and visionary of Runway of dreams she was able to do it. Mindy was Debra Ruh´s Human Potential at Work on episode 117 on that episode she explained how Runway of Dreams aims to be the authority on incorporating modifications to mainstream clothing for the differently-abled community, changing the landscape of fashion as being ALL-INCLUSIVE.
On September 5 during the NYC Fashion week, Sara was able to be one of the models that kicked off the event that featured the amazing adaptive clothing designs by Tommy Hilfiger, Nike, and Target. Showing everyone that the power of clothing surpasses the evident and it has the possibility of being a light and a tool for expression for everyone, without distinction.
The event was a complete success with incredible attendance both in the event, and around the globe through Social Media RJ Mitte from Breaking bad was the host and along all other models made the evening something spectacular.
We want to share with you Sara Ruh´s achievement and the amazing work that the Runway of Dreams Foundation is doing for the community of People with disabilities, please watch the video and share with your family and friends, listen to the episode and engage people in the bigger conversation of inclusion.
The Internet of Things (IoT) a term coined by Kevin Ashton in 1999 that refers to the network that enables objects to communicate with each other and exchange information. The IoT is what we can call the next step in the evolution of wireless networks, the progress that has been made from closed networks to enterprise IT networks to the internet has been faster than anticipated and it is expected that by the year 2020 nearly 50 billion things will comprise the IoT, creating a $1.7 trillion market.
Most of the advancements in technology tend to focus on convenience, on making life easier for people around the world. The IoT is changing fundamentally the way people interact with their environment, and how they carry out everyday tasks. Some of the applications of the IoT in the household enable users to adjust the temperature remotely or turn on lights from their bed; they can also check the door from the comfort of their desk, activate alarms, control door locks and other appliances, all of these remotely. While it is true that these advances make life more convenient for the general population they are an excellent tool for People With Disabilities they enable PwDs to become independent and self-reliant, the IoT can be a great equalizer of opportunities if applied correctly.
The IoT can be a great equalizer of opportunities if applied correctly.
Everything will be connected.
As Jacob Morgan said in 2014 “The new rule for the future is going to be, “Anything that can be connected, will be connected.” It is imperative to recognize that the importance of the IoT does not lie solely in the numbers, it is an essential component of development, and an opportunity to achieve real equality. As substantial new opportunities are opening up through improved access and use of Big Data Techniques, are becoming an essential tool in the advancements necessary to achieve the Sustainable development Goals in both developed and developing countries.
Nevertheless there is important data to consider for example; in the 2016 ICT Households “Survey on the Use of Information and Communication Technologies Brazilian Households” among households without internet connection one of the reasons cited for the absence of this technology in their household was: concerns about security and privacy with 40%. This number is significant and should be taken with consideration because one of the most significant risks of the IoT seems to be that it provides hackers and cybercriminals with more entry points, and privacy becomes almost secondary when everything is connected, what information is off limits?
The opportunities and advantages presented by the IoT outweigh the risks and threats presented by a connected household.
Privacy and security concerns.
These question, and others that raise from the security and privacy concerns, are crucial as security and privacy are mentioned as one of the critical aspects that must be considered in the implementation and adoption of IoT to improve people´s lives in the publication titled “Harnessing the Internet of Things for Global Development” published by ITU and CISCO as a contribution to the UN broadband commission for sustainable development. Trust and confidence are fundamental in the adoption and implementation of the IoT, and “two key components to ensure trust and confidence are privacy and security: a) Strategies to protect privacy must take a range of risks into account from a variety of different sources as well as adapt to local regulations; and b) Acceleration of research into IoT related security threats to minimize the downsides of the IoT across M2M and M2P communications.” (Biiggs, Garrity, LaSalle, Polomska, & Pepper, 2017) Those two key components need to be implemented together, not phased it is essential that we minimize the risks while the technology and research catch-up.
The main issues presented regarding security have to do with the fact that it may be vulnerable to hacking, companies might not be ready as first iterations of products usually tend to have flaws and that there is no consensus on where security should be implemented. Looking at privacy the concerns grow since there is just too much data floating on the internet with only 10, 000 households connected we could be talking about 150 million discrete data points every day. That is why several theories and documents explore the ramifications of security in the IoT in this article we provide information regarding approaches that have been taken to ensure security in the past and how there is not one single solution in the effort to achieve full security for the IoT.
Conclusion.
In conclusion, the IoT provides an incredible opportunity for development and advancements in the search for more equitable societies. However, these advancements require the correct implementation of security and privacy measures that enable users and households to confidently approach tasks in different ways, that is why it is necessary not only for the legal framework of countries to guarantee that data remains private and that security is taken into consideration both at the device and network levels. The opportunities and advantages presented by the IoT outweigh the risks and threats presented by a connected household that is why it is our belief that security must be a primary concern of countries, developers, and engineers as we approach the reality of a fully connected household and world.
Works Cited.
Biiggs, P., Garrity, J., LaSalle, C., Polomska, A., & Pepper, R. (2017). Harnessing the Internet of Things for Global Development. Retrieved from International Telecommunications Union: https://www.itu.int/en/action/broadband/Documents/Harnessing-IoT-Global-Development.pdf
Brazilian Network Information Center. (2016). 2016 ICT Households. Survey on the Use of Infromation and Communication Technologies in Brazilian Households. Retrieved from nic.br: http://www.nic.br/media/docs/publicacoes/2/TIC_DOM_2016_LivroEletronico.pdf
Bugeja, J., Jacobsson, A., & Davidsson, P. (2016). On Privacy and Security Challenges in Smart Connected Homes . Retrieved from Muep.Mau.Se: https://muep.mau.se/bitstream/handle/2043/21507/2857a172.pdf?sequence=4&isAllowed=y
G3ict. (2015, July). Internet of Things: New Promises for Persons with Disabilities. Retrieved from G3ict: https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0ahUKEwjLhszY0b_YAhVMRyYKHU-9BYkQFggrMAA&url=http%3A%2F%2Fg3ict.org%2Fdownload%2Fp%2FfileId_1025%2FproductId_335&usg=AOvVaw0Rd0Qa1WeM7InqYsP4gM8-
Lindsay, G., Woods, B., & Corman, J. (2016, March). Smart Homes and the Internet of Things. Retrieved from Atlantic Council BRENT SCOWCROFT CENTER ON INTERNATIONAL SECURITY: https://otalliance.org/system/files/files/initiative/documents/smart_homes_0317_web.pdf
Madnick, S. (2017, May 8). Security Surprises Arising from the Internet of Things (IoT). Retrieved from Forbes: https://www.forbes.com/sites/ciocentral/2017/05/08/security-surprises-arising-from-the-internet-of-things-iot/#21aeb6324958
Meola, A. (2016, Dec 19). How the Internet of Things will affect security & privacy. Retrieved from How the Internet of Things will affect security & privacy: http://www.businessinsider.com/internet-of-things-security-privacy-2016-8
Morgan, J. (2014, May 3). A Simple Explanation Of ‘The Internet Of Things’. Retrieved from Forbes: https://www.forbes.com/sites/jacobmorgan/2014/05/13/simple-explanation-internet-things-that-anyone-can-understand/#6bb174ac1d09
Suo, H., Wan, J., Zou, C., & Liu, J. (2012). Security in the Internet of Things: A Review. Retrieved from International Conference on Computer Science and Electronics Engenieering: https://www.researchgate.net/publication/254029342_Security_in_the_Internet_of_Things_A_Review
Wind River. (2015). Security in The Internet of Things: Lessons from the Past for the Connected Future. Retrieved from windriver.com: https://www.windriver.com/whitepapers/security-in-the-internet-of-things/wr_security-in-the-internet-of-things.pdf
Healthcare is a topic that has been in discussion a lot lately in our political climate. Whether you are on one side or another of the debate, we all can agree that healthcare is something we all wish to have easy and affordable access to. Paying attention to our health is vital to our personal care. Thinking about my role within this entire system I have some thoughts.
Soon, I will be beginning my service as a volunteer medical assistant at a local free clinic. As a pre-med student, I am absolutely ecstatic to work for an organization that is committed to the ideal of healthcare as a basic human right. Last night, I was filling out my paperwork and completing some pre-orientation training. At the end of learning about the incredibly comprehensive care this small clinic offered to approximately 1,600 patients, I reached the last section of training: health care considerations for gender non-conforming patients. Often, this cohort faces a lot of difficulty accessing care because of their gender expression and how it relates to their bodies. Gender non-conforming patients are often discriminated against, misunderstood, disrespected, and are at-risk for higher incidence of certain medical issues that they are less likely to get treatment for because of the way they have been treated by healthcare providers in their lifetime.
I was extremely pleased by this training because it is absolutely necessary in ultimately reaching the goal for empathetic, quality healthcare for all. However, it got me thinking, what about all non-conforming bodies? Specifically, what about the community of people with disabilities (PwD)? What challenges do they face accessing healthcare and as a future provider, what can I do to educate myself and address these problems?
As I began my investigation, I encountered a prevailing attitudinal problem in accessing quality care for the PwD community that held parallels with the gender non-conforming community: the perception that your non-conforming body is the primary and predominant factor in diagnoses and treatments and that you are too difficult of a patient to treat. In no way is this the only barrier to access. One would have to live in a complete vacuum to not be aware of the debate on healthcare and the affordability of healthcare in this country, let alone the myriad of other barriers to access. However, I’d like to focus on this barrier because of it’s compelling social and cultural implications in how we perceive non-conforming bodies.
In the transgender community, activists have named the tendency for providers to attribute all their medical complaints to the fact that they are trans “trans broken arm syndrome”. It comes from a hypothetical scenario: a trans person goes to the emergency room for a broken arm and upon realizing their patient is trans, the provider ignores their arm altogether, concentrating all their attention on the fact that they are transgender[1].
In a qualitative study conducted by Dr. Mary Ann McColl (et. al.) on Physician Experiences Providing Primary Care to People with Disabilities, her team of investigators found that one-fifth of the primary care physicians participating in their study held a similar perception to their patients with disabilities[2]. This can cloud the judgment of the physician’s diagnostic reasoning by not properly exploring alternative causes to their patient’s complaints. It can also be incredibly insensitive to someone’s whole being. What a patient with a disability may perceive as simple a state of being, as they have simply lived with their disability and learned to adapt successfully to it, the provider perceives it as inherently illness. Disease does in fact coexist with disability but it is not an implicit condition of being disabled.
An incredible and compelling anecdote of these contradictory attitudes can be found in the neurologist Dr. Oliver Sacks’s case study of a man who has restored sight after being blind from the age of 10-50 titled To See and Not See. Virgil was suddenly able to see for the first time in his life after strong encouragement from his fiancee to pursue corrective surgery that suddenly became an option following the discovery of a misdiagnosis from when he first lost his sight. Virgil’s world descended into neurological chaos after the surgery in a strikingly similar fashion to the only 20 other cases ever recorded[3]. Vision was overwhelming and confusing because Virgil was astutely adapted to navigating the world without sight. Dr. Sacks explains that seeing and sight are two separate things. One must learn to see with the eyes and Virgil was no exception. He often found himself closing his eyes and reverting back to tactile sensing instead of dealing with the menagerie of confusion that was the totally foreign and new perception of light and shadow[4]. In fact, Virgil expressed what could be interpreted as regret, explaining how he experienced much more fear with sight than without it[5].
This anecdote to me truly illustrates the mental block that disability can present to providers. I am not speaking on behalf of the whole community as I’m sure depending on an individual’s perception and circumstance that they may very well understand their disability in the context of illness. However, my point is that this is not always the case and healthcare providers should know that many people with disabilities perceive their condition as simply part of them- a state of being, not an illness. I for one have reached that point with my epilepsy because it is a mild and rare form that has resisted all treatment. I know what my baseline is and if I experienced a change in it, I would seek medical attention. It would be disheartening if I found that my provider did not listen to me or trust that I understood what was normal for me and didn’t take that into consideration in determining a treatment plan. In fact, beyond being disheartening, it could lead to poorly informed conclusions and ill-conceived treatment.
Dr. Mary Ann McColl’s study also found the providers participating in the study felt unprepared to give a proper examination of their patients with disabilities and experienced their patients teaching them about their bodies[6]. Many participating physicians expressed enthusiasm for this learning experience and how they felt it was very important to them.[7] However, in the same vein of thought, some of the participating physicians in Dr. McColl’s study were hesitant to take on patients with disabilities because they saw them as too difficult[8]. The need for patients to teach their physicians is common in trans patients as well. According to the National Center for Transgender Equality, over half of all trans people have to teach the fundamentals of trans health care to their providers[9]. This points to a serious deficiency in education and training, which can be mind-boggling for the patients- physicians are supposed to be the experts on their human body, not the other way around.
I think some educators and providers might see this training and awareness as taxing and perhaps, extraneous but I implore those in charge of training, receiving training and in practice to please consider the implications of more inclusive care for both patients and providers. This is bigger than us and our egos. Healthcare providers are entrusted with the most vulnerable parts of a person’s being and in order to uphold the integrity of the profession we must zealously guard and strengthen this trust. Being informed and trained to properly examine and treat a body-diverse patient population reinforces the trust they have in us.
Is it not natural to doubt the years of training and expertise that comes with medical training if a person must explain their body to you? By increasing awareness, improving medical training, taking personal responsibility for extra training, and truly listening to the patient with empathy and respect, we are not only ensuring patients have the best care that providers can give, we are also helping to maintain (or establish for the first time) their trust in the biomedical model as a whole. To do otherwise is a disservice to everything we have sacrificed for this role and as my journey continues, I am well aware that the sacrifices are great. We have nothing to lose in becoming more informed but a lot to gain and take back in terms of respect and trust. I hope that learning to more effectively treat anyone who has a non-conforming body will become a vital aspect to our training. Then one day, no one will hesitate to seek medical attention out of apprehension, but instead trust and respect their team of healthcare providers and feel supported, affirmed, and cared for.
The media always has had a tremendous impact on molding public view about persons with disabilities (PWD). Until twenty years ago, the media portrayed us as helpless, heroic, or mean. It did not show us as people who held jobs, were in romantic relationships, or raised families. These portrayals are based on Dark Ages perceptions of us. PWDs were institutionalized or hidden away in the back room. If a PWD managed to overcome obstacles, such as FDR, they did not publicize that they were disabled.
Elephant Man Poster
For example, such films as “The Elephant Man”, “Born on the Fourth of July”, “The Glass Menagerie”, and “The Waterdance” all depict characters with disabilities who are down on themselves, who are programmed to think they are worthless in society’s eyes. Their negative self-images cast shadows over the viewing audience’s perspective towards us. Scenes of the poor helpless disabled resonate in a viewer’s mind if it is not open. These types of movies run the risk of making employers ask themselves “Why would I want to hire someone like that?”. They dissuade other persons to interact with us.
At the other extreme, movies like “Rain Man”, “My Left Foot”, and “Rear Window” show persons with disabilities as heroic, as having some kind of God-given power to solve problems that nobody else or to be renown for some great feat. While this may boost our egos, the hero concept can place pressure on us. I’ve experienced this throughout my life. I’ve been expected to be the Wonder Woman of the Intellect because I’m intelligent with disabilities, not just because I’m an intelligent person. Being looked upon as a hero also gives the false assumption that we don’t need assistance or accommodations.
Persons with disabilities also have been portrayed as ill-spirited. Mr. Potter in “It’s A Wonderful Life”, for instance, is a banker in a wheelchair who is greedy and mean. Another example is Peter Sellers’ “Dr. Strangelove, an evil scientist who also is in a wheelchair. The stereotypical role gives the perception of being disabled makes someone mean or unfriendly. Again, this perception may seep into people’s subconscious, especially those of children. They may see mean fictional characters with disabilities, such as Captain Hook in “Peter Pan”, Quasimodo in the “Hunchback of Notre Dame”, and Darth Vadar in “Star Wars”; and then they may be frightened to approach real persons with disabilities.
Yet, the media finally emerged from the dark ages. Movies and television shows have started
Reasonable Doubts Cast
portraying us in a much more positive light in the last twenty years. For example, an actual actress who is deaf (Marlee Martlin) played an assistant district attorney who is deaf in “Reasonable Doubts”. Other examples include a policeman who is in a wheelchair in “Cagney and Lacey”, a doctor who walks with a cane in “House”, and a paralyzed professor in “Professor X”, just to name a few. The movie “Intouchables” even portrays a rich quadriplegic who ends up paragliding and getting a girlfriend.
Nowadays actors with disabilities also are earning awards for television and movie roles. At the recent Emmy Awards, Peter Linkage won the Best Supporting Actor Award for Games of Thrones. Dinklage has dwarfism, yet his disability actually helped land his role. Marlee Marlin, mentioned above, earned an Oscar and Golden Globe for Best Actress for “Children of A Lesser God”, where she portrays a deaf cleaning woman whose intelligence is discovered by a special education teacher.
Although no scientific studies have been conducted between public perspective of persons with disabilities and their portrayals in the movies, seeing positive images of us in the media can only foster further integration in society. Businesses are more motivated to employ us if they view us as doctors and lawyers on the movie and T.V. More beauty and sex appeal are attributed to us if more we are shown as caring, loving, and sexual on the small and big screen. If the entertainment industry wouldn’t focus on the disability but on the characters who just happens to be disabled, then society would follow suit.
Blogger, Writer, & Systems Administrator at Ruh Global Communications
Photo from Addition Elle
Facebook and other social sites are ubiquitous in today’s society. They bleed over from business into personal and then back again. This can be really great, but of course there are some disadvantages to constant social streaming. The internet has always been a place where people can feel free to state any idea openly and anonymously if they chose. In a time when anonymity on the internet is becoming less frequent, we may see some unsettling things from those we know. This is not to say that these social media sites do not have any merit though.
A year ago I deleted my Facebook (for the third time). It’s easy for me to recall what pushed me over the edge from casual deactivator to resolute detractor. A high school acquaintance had posted a picture of the model Ashley Graham and proceeded to fat-shame her. How dare Ashley Graham call for body-diversity at the sacrosanct Victoria’s Secret fashion show! Once my anger subsided, I paused, and deleted my venomous response. My anger soon turned to deep sadness. My former classmate saw beauty through a precise lens that dissected diversity into ugliness while I felt an effervescent fullness as multitudes of people, places, and things passed.
Ashley Graham (3rd person form the left), photographed in the #ImNoAngel Campaign by Lane Bryant,
Don’t get me wrong. I didn’t just delete my Facebook because everyone was making me angry and I wanted to distill my social interactions into a discourse-free harmony. It was a lack of discourse; a lack of conversation, that made Facebook seem pointless. In place of conversation was what has come to be known as “call out” culture. This is where people attempt to publicly shame people for their views via social media. I saw more “calling-out” than real engagement, and I wasn’t sure what to do about it.
So this is me calling on people to take a moment to re-evaluate their crusade. It’s easy for me, in the heat of the moment, to think of someone as less than me for not sharing the same viewpoint. It’s especially easy when I perceive them as being on the other side of justice. It’s easy, but is it really productive to call them out? To tell them how wrong and hateful and ignorant they are? To make certain to let everyone know in your group of friends that this person has these inexorable qualities and must be shunned? Maybe there just needs to be a little more understanding, a little more listening. Maybe if I had a conversation that carried these qualities, I could have changed my acquaintance’s mind.
I’ve become even more aware of this recently. I work for Ruh Global Communications, a Strategic, Social Media and Consulting firm who specializes in the accessibility and inclusion realm. As a result, I work with many talented individuals with disabilities. That being said, In the community of Persons with Disabilities, I’ve found that, as they try to find their voices, some people can appear negatively vocal on Social Media about slow change in true inclusion of individuals with disabilities.
When a person posts something disparaging on Social Media, maybe we can try different ways to really engage by framing our approach creatively and in a thoughtful way. Not only responding without condescension or presumption, but really listening; seeking to understand, asking the candid questions that drive at the root of someone’s worldview to understand why it is this person thinks the way they do. Also take into consideration whether they truly have positive or negative intent. Remember we can also use these times as an opportunity to share knowledge and training with others. I think this has the potential to be mutually beneficial and well worth the energy required, even though at times it takes a lot. It’s easy to go negative when things are not up to par, but we run the risk of coming off in a way that isn’t adding value to the conversation. Positivity brings change; not to say that we shouldn’t be vocal, Speak up about the change you want to see! Disappointment can be angering, but remember that we want change and others want to help; we all just need to be receptive to change and listen if we want to be heard. We must try to keep the dialogue open, grounded, and as positive as possible.
I hope that the “call out” culture that has become so prevalent on social media amongst my peers can begin to change. I hope that we can begin to try to create meaningful shifts in attitude through genuinely empathetic conversations. Our community would be benefited by allowing a deeper understanding of what barriers exist in people’s minds towards understanding our community and if the person allows it, their world could become a much more enriching, beautiful place.
On May 18 Global Accessibility Awareness Day (GAAD) will be celebrated once again. GAAD is the sixth annual effort to tell the world that access to digital technology (e.g. Internet, mobile, software) is vital to persons with disabilities. If digital technology isn’t accessible, many of us can’t work, shop, bank, or socialize. According to the National Telecommunications and Information Administration, technology still doesn’t seem very accessible,
GAAD (Global Accessibility Awareness Day) Logo
for only 32% of persons with disabilities in the U.S. use computers and the Internet.
Some brand companies (now commonly known as “brands”) see the importance of making technology accessible, however. Besides benefiting persons with disabilities, these companies also realize it will increase profits and enhance public image. According to Return on Disability, consumers with disabilities worldwide hold $1 trillion in disposable income. Companies who don’t jump on the accessibility bandwagon are definitely losing out.
Microsoft Accessibility Technology for Everyone
Apple and Microsoft, two of the biggest technology brands in the world, also are giants in making technology accessible. Both include accessibility features in their hardware and software. Additionally, both have developed strategies to make technology more usable for persons with disabilities. For example, Microsoft’s Enable group develops technologies that help us live more independently. The group’s latest endeavor is combining image recognition of actual surroundings with eye gaze technology.
Young boy holding an iPad at an Assistive Tech Demo, Taken by Raminta Zebrauskas – AMAC Team PhotographerApple Logo
Apple also is making great strides in the development of accessible digital innovations. Like Microsoft, Apple has accessibility features built into their products such as Global Access in iPad and VoiceOver screen reader for all its products. Thanks to Apple, persons who are blind or visually impaired actually can take pictures using their iPhones by following spoken cues in the camera that says the number of subjects in view, their distance, and the focus level. Another Apple innovation in accessibility is the iPhone offers a Braille keyboard for blind users.
Yet, big tech giants aren’t the only brands who place a strong emphasis on accessibility. Dropbox, one of the leading online file storage services, published a blog post called Creating A Culture of Accessibility. The article describes how the company integrates accessibility in its products and a genuine interest throughout the company. For instance, Dropbox organizes Assistive Technology (AT) Labs where company employees learn to use various AT, such as screen readers, with their products. Lab participants are assigned three tasks to do with a product (e.g. Dropbox web app), from a simple action to a complex procedure. If they discover an issue, a Dropbox engineer can remediate it.
Dropbox Logo
Another brand that has gotten on the accessibility bandwagon is Starbucks. Two years ago the mega café developed an app for all customers, but it’s especially helpful for those who are deaf and/or nonverbal. Starbucks Mobile Order and Pay allows them to enter an order and pay before they arrive at a store location. Consequently, customers with communication impairments won’t become frustrated or feel ignored, and the Starbucks service representative doesn’t have to invest time in trying to understand what they want. Besides the app, Starbucks also has ensured their websites and apps are accessible by establishing the Web and Mobile Community of Practice where developers, technicians, managers, and other Starbucks personnel continue to work towards accessibility.
Starbucks Logo
Not only more American companies are incorporating accessibility within their business frameworks; companies overseas also are establishing accessibility programs. Barclays, the leading bank in London, has realized that accessibility and inclusion are vital in maintaining customer and business relations. They believe everyone should have access to their opportunities, programs, and products. Barclays is demonstrating this belief through several initiatives. For instance, last year the London bank launched “Let’s Talk Accessibility”, an internal education and training program that teaches its colleagues about how the bank integrates the needs of persons with disabilities in every aspect. As for accessible innovations, Barclays developed Contactless Payment. Similar to Starbucks’ Mobile Order and Pay, customers enter banking information in their mobile devices before going to an ATM. When they arrive at banking machines, they just tap their bank cards against the kiosk to complete transactions. This technology prevents customers with dexterity or vision impairments from struggling with inserting cards into slots or pressing tiny buttons to enter information.
Barclays Logo
According to David Caldwell, IT Accessibility Manager for Barclays, “The important point to make about both our purpose and our ambition around accessibility is that we have them not just because it’s the right thing to do but also that they make good business sense.” Hopefully, many more companies will realize the validity of that statement. Then Global Accessibility Awareness Day would be celebrated each day.
That’s how it is with purple, a hue that communicates royalty, majesty, and power.
Nash is also the creator of #PurpleLightUp and is focused on creating international unity among the disabled, celebrating the talents and economic contributions made by the disabled community around the globe.
