Accessibility is an elusive subject when it comes to universal design. When I talk about accessibility am I talking about how easy it is for an audience to access the content on different devices, how wide of a market the content can reach or literally how accessible it is?

The word gets thrown around a lot in the design industries, but when AbleGamers—a non-profit dedicated to getting people with disabilities access to video games—talks about accessibility we mean, “How much of the disability community can access your game?”

Gold Standard

Includification—a practical set of game accessibility guidelines—was born out of the need to teach good universal game design. The final product ended up being 48 pages, fully illustrated with examples and guides on how to design video games individuals of varying abilities would be able to access.

The guidelines demonstrate best practices in game design in a three-tiered system of good, better and best. The AbleGamers Foundation established these guidelines to show developers how important accessibility can be and how many people are affected by the choices made early in the development cycle.

By including things like remappable keys, subtitles and colorblind options, we enable a large percentage of the disability community to participate in the game. But these very basic accessibility features are also universal.

In other words, everyone wants the convenience factor of accessibility options. Such features not only help gamers with disabilities, but improve the quality of the experience for both able-bodied and disabled gamers alike.

The gold standard of universal design is to allow features that appeal to the broadest audience possible. In this case, who doesn’t want the ability to change buttons in a game to the ones most convenient to them? Who doesn’t want the ability to read character dialogue when they can’t turn the sound on in fear of waking the sleeping baby at 3 o’clock in the morning? And who doesn’t want the ability to change the colors on the screen to whatever is the most aesthetically pleasing and easiest to see?

The answer is simple: everyone wants the ability to customize their game to maximize fun and minimize frustration.

The Numbers

Over 33.5 million people with disabilities in the United States consider themselves gamers. With over 1 billion people living with some sort of disability worldwide, it’s important to realize the importance of accessibility.

Those numbers are only going to grow as the baby boomers grow older in North America and the world’s population of digital entertainment consumers continues to age. We expect the number of disabled gamers to reach 100 million in just a few years.

It’s important to think of good game design as the golden standard by which we should all aspire to achieve. Just as subtitles have become standard on every television set and most webpages must adhere to 508 compliance, we should fight for the right of our disabled friends and family to be able to enjoy Angry Birds and Words with Friends.

And that’s the true meaning of accessibility: options that are necessary for some to participate at all while making the content more convenient for others, yet improving the experience for everyone.

—

Steve Spohn is the Editor-In-Chief of AbleGamers and Outreach Chair for the AbleGamers Foundation. He has been interviewed as an expert in gaming with disabilities and assistive technologies by MSNBC, CNN, PC World, G4 and multiple international journals. Steve, who has spinal muscular atrophy, is a 32-year-old Pittsburgh native. He has traveled widely to speak at various events, including PAX East, Abilities Expos, universities and many developer studios. He is also a Web designer, gamer and writer.

Recently I received a “Disability and Me” article from Zacharay Lassiter, a young man diagnosed with Asperger’s syndrome. His recent article A Struggle to be Normal really had me thinking about what normal is.

According to Dictionary.com, normal means: conforming to the standard or common type; usual; not abnormal; regular; natural.

The following is a paragraph from Zacharay’s article…

Many of us with disabilities wish so hard that we were normal, that we could walk like a normal person, see like a normal person, hear like a normal person, or think like a normal person.  Many of us start to get angry when we struggle to be normal and fail.  We don’t feel worth our friends’ time, and feel like we’re the drain in relationships when in fact we can be just as loving or caring as anyone else.

Have you ever wondered if you were normal?

Human behavior is complex, determined by interactions between a variety of internal and external influences. Do you evaluate your behavior on your perception of what normal is?

Often when we decide what is normal, it is in the sense of determining whether the way we think and act is the same as… or similar to… the majority of people. Social standards can have a strong influence on our idea of “normal.” You can even purchase books or take a quiz to find out if you are normal!

Zacharay writes that many people with disabilities wish they could walk like a normal person, see like a normal person, hear like a normal person or think like a normal person.  

Throughout my life I have heard the following statements, have you?

• Would you eat like a normal person
• You need to drive like a normal person
• Can’t you walk like a normal person
• Act like a normal person
• Look what you are wearing, can’t you dress like a normal person

When someone says “can’t you walk like a normal person?” What does it mean to walk? Some people take big steps, others take small ones. Some people skip or sashay when they walk. Some point their toes inward and others drag their feet.

I never asked, even though I really didn’t know, what doing something like a normal person really meant.

Who in society should we observe and model our behavior after, so we are able to act normal?  Our teachers, parents, siblings, aunts and uncles, the lady down the street…who?

It seems like we are always trying to figure out what normal is.

But in all honesty, things change overtime, for instance, mythsabout people with Asperger’s syndrome. Increased knowledge and awareness about what it is have changed over the years.

I tend to agree with Zacharay when he asks, “What is normal and how do you define it?” I would love to hear from you.

You’re making a list, checking it twice and trying desperately to figure out what to give everyone on that list.

Not an easy task for sure. But then as you go down the list you see the name of a child who has a disability, and the task of buying a gift seems even more challenging. You question whether the age guidelines on the box will apply to this child? Will the child know how to use it? Will it be safe? Basically, you just aren’t sure how to approach this.

Maybe you will just get a new sweatshirt instead.

But what if you had a guide to assist you in your selection? 

Toys-R-Us has produced a catalog especially designed for children who are “differently-abled.” It includes a buying guide and even breaks down toy selections based upon specific areas of need a child may have. There is some really great information in this guide and it would be a good tool for selecting toys. I love the fact the various models playing with the toys are engaged with toys for their age group.

For instance, they don’t have pre-teens playing with toys designed for a toddler. I also appreciate the fact they selected toys that kids without disabilities would play with.

This resource is very well done.

However, in a time when we are endeavoring to assist people with disabilities to be non-segregated members of society…

Is a special catalog sending the wrong message?

Would it be possible to include the tips offered in this catalog in a general catalog? Would that accomplish the same goal without singling out the unique needs of children with disabilities? Would it better foster the idea that kids have more similarities than differences? Would it actually assist in breaking down some of the misconceptions about children with disabilities if these tips and models were seen in more widely publicized catalogs?

I have to admit I am conflicted about this one.

I see the benefit of a resource like this. I just wonder if it could have been more valuable if it was included within the regular catalog. What are your thoughts?

So Many Answers Left Unquestioned was the theme of the most recent TASH conference in Long Beach, California. As themes go, I like it. It’s clever, insightful and actually very appropriate to this field. We have a certain legacy of leaving important issues, trends and accepted truths go unquestioned.

That legacy led to the practice of institutionalization, because ‘they’ were not appropriately ‘placed’ in communities. Early in the 20^th century, the experts of the day were all about protecting a ‘defect-free’ human race. Their unquestioned answer helped create a decades-long eugenics movement.

Today’s questions

Today, some autism advocacy groups, e.g., safeMinds, are questioning answers in a different and somewhat troubling  way. The answers they are questioning are at the heart of discussions about the incidence of autism, and they are those of the global medical research community. The story is one that has been going on for some time.

Even though more than ten years and dozens of large scale independent studies involving  a deliberate, detailed and sophisticated process indicate no relationship whatsoever between vaccines and the incidence of autism, a number of individuals and organizations remain unconvinced. It is ironic that the formal research methods they are questioning  include a disciplined level of critical thinking, dynamic peer review, and a pattern of replication around the world. In other words, formal research is in the very business of questioning answers.

I would be more open (and admittedly a little more respectful) of the position of those who choose to dismiss the research findings were it not for the fact that so many have their own business interests and publicity interests at stake. The science is even being questioned in congressional hearings by people like Rep. Dan Burton (R-Ind.) who states that “mercury in vaccinations is a contributing factor” to the incidence of autism even though autism rates continue to rise throughout a ten-year period in which thimerosal (the mercury containing preservative) use in children has virtually disappeared.

To some extent, we’re all guilty

Before casting stones too freely, though, it might be good to remember both our legacy and our own personal prejudices and failings. It is easy to believe ourselves to be the only enlightened and free-thinking ones on issues for which we have strong feelings. No one is immune to that pattern. Not you. Not me. Not even people with disabilities themselves.

For example, in a world in which the Medicaid system has been repeatedly shown to be unsustainable, many well-meaning professionals continue to stand shoulder to shoulder with self-advocates, making their appeal for “no cuts” and “no caps” to the program. By doing so, they are defending a convenient answer that is in serious need of questioning. We need something better.

Thank you, friends at TASH, for the awfully nice conference as well as the reminder to keep on questioning the answers that drive our thinking.

It has been 24 hours since the phone call.

My grandson was having tests done. I was patiently waiting for the phone call to hear the results. I was also thinking about some of the behavior changes I’ve seen in him over the past few months. He used to respond when you called his name, now I can say his name over and over, with no response. Not even a glance my way. He used to let me hold and snuggle with him, now it is a struggle to get him to hug me or to sit on my lap.

Then the call came.

It is not easy to hear your grandson has autism.

My heart sank and for a brief moment my world stopped. Several thoughts went through my head. “How do I come to terms with the fact my grandson has autism? How will I cope with this? What can I do to help my son and daughter-in-law? How will this change their life? After all, their life will be different than what they expected it to be.”

I work for an organization that supports people with intellectual and developmental disabilities.

People who know me know I am an advocate for the people we support. As adults, I believe they should choose the life they want without having unnecessary restrictions placed upon them from their parents or guardians.

Years ago I worked as a direct support staff. As many of you know, that means working closely with the people you support and their parent/guardian. There were some parents/guardians who weren’t as involved as others, and to be honest it made your job a lot easier. But then there were the parents/guardians who seemed to always be involved and interfere.  Well, that is what I thought anyway. Some of you know what I am talking about! The parent or guardian who wanted to ensure their loved one is protected and cared for by being constantly involved and making all or most of the decisions for the person.

I could never understand why they wanted so much control over their child. Didn’t they want them to experience things? Didn’t they want them to make their own decisions and learn from them? Didn’t they want them to grow up? And at Christmas time and birthdays I never really understood why they would give their adult child a Mickey Mouse coloring book or pop-up toy made for a one year old!

For a brief moment, my belief changed.

As you can imagine, hearing this news fills you with many emotions. Shock and anger were among them. But one emotion seemed to overcome the rest, and that was protection. How was I going to protect my grandson from whatever in my mind, could possibly hurt him? He is only two, but my thoughts about how to protect him were working their way into his adulthood.

I had a timeline in my head! I thought to myself, what will happen when he starts school? Will other kids make fun of him? What about high school? Will he ever play football or go to a dance? After he graduates, will he be able to live on his own or get a job? Will he get married and have children? In that brief moment I was determined that if I had to hover over him, be involved in every part of his life or give him a toy that he would have fun playing with but wasn’t what some would view as age appropriate, so be it! I needed to be involved and protect him!

Then something happened to me.

I thought about the parents and guardians that I used to think interfered too much and were too protective of their child, and now I understand. But the fact is, whether a person has a disability or not, they should make choices and decisions about their life. Protecting someone from certain life situations is an honorable thing, as long as it is done without unnecessary restrictions.

As I support my son and daughter-in-law I will keep this in mind and hopefully help them make the right decisions for my grandson.

Trust in God is a common theme heard in church. Trust is the assured reliance on someone or something.

“Trust in the Lord with all your heart and lean not on your own understanding”

(Proverbs 3:5 NIV)

This has been the verse I live by. I do not understand why I was born nonverbal with autism. The odds were so against this happening to me. I often ask myself “Why me?” Why did this happen the way it did? The thing is, I know God has a reason.

Time has taught me that. He has used me to help others who have children disabled with autism. This seems to be my purpose so far. I hope I have more to do in this area. I trust that God will show me the way I can do this. I have no understanding of what lies in front of me, but I have to trust God to show me how to serve others in the best means I have.

I not only have to rely on God, but I have to put my trust in many others.

Due to my disability, I have poor self-help skills. I must depend on others like a little child. Having no way to take care of myself, I have to live in reliance on others. I depend on my mom for so many things. She helps me in my daily living. She has also been the person helping me fulfill my goals in life. Going to college and writing my book have been possible due to her assistance. I hope she will continue to help me. Trusting my mom is possibly second only to my trust in God.

Not only do I have to have confidence in my parents to love me and meet my needs, I also have staff people who must help care for me in the good ways that my parents do. I need to be able to trust them. I have to depend on them to help me in preparing meals, toileting, communicating and almost everything I need. Some staff only have things that they want to do, not always worrying about my choices. That is very hard to deal with.

I have also had wonderful staff who I trust completely, staff who have patience with my difficult behavior. I have seizures and some very difficult behaviors like accidents and making noises. But my staff helps me to be independent on my level. I trust what they teach me and do for me.

Being able to give another person your trust depends on many things.

This is hard to explain. Trusting someone takes time. It happens gradually. Meeting my needs helps to build my trust. Creating more trust involves honesty. I have to believe what a person is telling me if I am going to rely on them. The person must prove to you that he/she thinks of you first. Your wants or needs take priority over theirs. I like to feel like I matter in more ways than just being a “job.”

Trust comes from caring. Cade is one of my staff who now has become more of a good friend. I think I have become more than a job to him. I know I can trust him because I know he genuinely cares that I am okay. Feeling that someone has real concern for others helps me trust them. Everything a person does leads to my personal evaluation of him/her.

Dependence on others is very frustrating.

I just have to trust that I like the things that people choose for me to have or do. I have to trust they have my best interests at heart and will make wise decisions. Since I have no voice without a facilitator and keyboard, I often have to go along with others’ choices for me.

For me, trusting others is not an option. Just like me, most people realize that they can only do so much on their own. Like me, people are dependent on God to meet their needs and lead as He guides all of us through life.

As I am totally dependent on others, we are all totally dependent and need to trust God.

“A house divided against itself cannot stand.”

I’ve been thinking of this quote by President Abraham Lincoln often this past year. We are one week removed from one of our nation’s most acrimonious and divisive elections. Pundits and “experts” are taking credit, assigning blame, and assessing what went wrong or what went right – dependent, of course, on one’s political leanings.

I happened to be in Washington, D.C. on Election Day.

It was refreshingly quiet and peaceful as most politicians were in their home state campaigning for those last undecided. Like many, I found myself totally fed-up with the bombastic rants from both sides of the political spectrum and frustrated by the lack of real dialogue on critical issues facing our nation.

My normal stress-reliever is to run. So I took a relaxing evening run along the national mall. I couldn’t help but reflect on the current state of our country as I passed the Washington Monument. I thought of the leadership General Washington exhibited in keeping a not yet formed nation together through a brutal revolution. As I passed the WWII Memorial I thought about the hardship faced by allied soldiers as they fought to rid the world of one of it’s greatest horrors including the “mercy deaths” of more than 275,000 people with disabilities at the hands of the Nazis.

As I passed by the Lincoln Memorial I thought of the ugly divisiveness of current US society that pales in comparison to the divided country Abraham Lincoln lead through our nation’s greatest (and real) crisis.

I was struck but the desperation and hopelessness of the great depression captured through sculptures at the Franklin Delano Roosevelt Memorial when no safety net existed for people with disabilities…or anyone else for that matter.

As I often do, I commiserated with Rev. Chuck Werth, a friend and Bethesda’s Vice President of Religious Life and Church Relations, who shared many of my frustrations with the intolerance and vitriol of the just concluded electoral season.

He shared with me the following prayer:

“Rid us, O Lord, of the arrogant delusions, which we hold regarding the times in which we live. We presume that our era is harder to live in and harder to live through than any previous time in our nation’s history. With a certain false pride, we suggest that we are being tried and tested more than any previous generation. Excuses abound for our neurotic screaming, our pitiful muddling, our eroded standards, our sentimental slobbering, and our pinching terror over the future. We confess that these arrogant delusions have caused a terrible division in our nation; two pitched camps each claiming to be protectors of the national heritage, when in fact, both have abandoned the fundamentals of your truth. Teach us, O Lord by your sane and steadying Word that we stand before you as we always have stood, living by your grace, striving to achieve that which is just and righteous in your eyes. Nothing in our present age has altered the great plain, steady fact that you are God and have not forsaken us, nor forgotten us. Confident in that truth, draw us together as a nation to work for the common good, standing shoulder-to-shoulder. Amen”

Now that the election is over, I pray that we can come together as a country and work to restore the greatness of the United States.

We can and must identify goals we can all agree on and compromise to make certain they happen.

We need to work together to create a Medicaid funding system for people with intellectual and developmental disabilities (ID/DD) that encourages true community integration and reduces waiting lists for people who desperately need support.

We must acknowledge and embrace the dignity of work for all people, including those with ID/DD, and work for increased employment opportunities in the community.

We must destroy barriers to employment by people with disabilities and pass legislation such as the Achieving Better Life Experiences Act, that encourages savings to be used for disability-related supports resulting in real consumer-directed services.

We should insist that all countries of the world embrace the inherent rights of people with disabilities through ratification of the United Nations Convention on the Rights of Persons with Disabilities.

We will never all agree on every issue facing the United States.

However, we need to engage in real and respectful dialogue to begin to address issues that can no longer be ignored like the federal budget deficit, unsustainable spending on entitlement programs, and high unemployment rates.  It’s time to act together to restore our nation’s greatness.  I pray that happens now.

We just completed national elections. Many of you exercised your right as a citizen to vote for the candidates of your choice.

But what about the people you support who have intellectual disabilities? Should they have the right to vote? Should their right to vote be limited based upon guardianship status or other measurements? If they do vote, how do we ensure they are not manipulated by people who support them? 

Recently a North Carolina family questioned their daughter’s voting rights when support staff at the home where she lived helped her register to vote and took her to the polls. The parents, felt their daughter was unable to make an informed choice and should not have been able to vote.

The laws regarding voting for people with intellectual disabilities vary from state to state with some states clearly removing the right to vote for people with guardians:

“No person who has been adjudged mentally incompetent, unless restored to legal capacity, shall be entitled to the privilege of elector”

– Nevada state constitution electoral statutes

“The right to vote can be removed under a limited guardianship or conservatorship”

–Kentucky guardianship statutes 387.590(10)(11)

While other states have laws that ensure a person’s right to vote:

“The appointment of a guardian is not a determination regarding the right of the ward to vote.”

– Georgia  guardianship statutes Art.3 29-4-20(b)

Organizations, such as Self Advocates Becoming Empowered, provide information on how to advocate for voting rights for people with intellectual disabilities. Their position statement clearly supports this right.

I have known people with disabilities who were well informed about the candidates and issues.

They clearly were making informed decisions when they voted. I’ve known others who would be unable to make an informed decision and in fact, would do whatever the person supporting them told them to do.

So how do we ensure the rights of people are not violated either by eliminating their right to vote or by manipulating them to vote when they are not able to make an informed choice?

I am not sure that a ‘one size fits all’ solution is the answer.

Although guardianship status may give an indication of a person’s ability to make decisions, it historically has been broadly applied rather than looking at each person and determining which areas of their life need assistance. Measurements such as IQ also may not provide a complete picture upon which to determine a person ability regarding voting.

In addition to determining if a person can make an informed decision, ensuring the decision is not manipulated by people in that person’s life is equally challenging. Is it possible that a person with a disability could be threatened if they do not vote in line with the wishes of the people they depend upon for support? What about when the people in their lives only allow access to information that supports one side of the issues? These issues and others only add to the debate about voter rights for people with intellectual disabilities.

There appears to be no easy answers to this issue but that does not mean we should do nothing. Rather, it means we need to open up the discussion and provide solid information to those who make the laws in this area.

Did you support someone who voted in the last election? If so, how did you ensure the integrity of their vote? What would you tell your elected officials in regards to the right to vote for people with intellectual disabilities?

The numbers have been circulating for years.

• Citing one prominent organization, a contributor to Christianity Today states, “perhaps 80% of the disabled are unchurched…”
• A church’s website proclaims, “… 95% of those with disabilities are unchurched.”

Numbers that high certainly get our attention, create a sense of urgency and may indeed spur faith communities to action. Unfortunately, no one seems to know exactly where those numbers came from and, for a very long time, they have gone largely unquestioned.

In recent years, there has been a fair amount of credible research (although not nearly enough) into the question of faith community involvement by people with disabilities, and numbers as high as those noted above appear to be simply unfounded.

Recent findings

The article, Recent Research on Spiritual Supports: What We Know and Where We Might Go, recently published in the TASH journal, Connections, highlights findings that have the potential to reshape our thinking. Consider the comparison of people with and without disabilities on issues as specific as church attendance, and as broad as the importance of spirituality in our lives.

The data captures our attention not because there are exaggerated differences between those with and without disabilities, but rather because we find such striking similarities. And these results are not new or unusual.  When researcher, Gerry Hendershot, looked at similar questions in a 2006 study, he found similar comparisons.

The 2010 survey by the Kessler Foundation and National Organization on Disability asked participants about the importance of their spiritual lives. Approximately 67% of people with disabilities identified their spiritual life as important them. This compares to about 64% of those surveyed who did not have a disability. On the question of church attendance, the survey asked participants if they “go to church, synagogue, or any other place of worship at least once a month”. 57% of people without disabilities said they attended at least once a month, compared to 50% of people with disabilities.

The most common explanations for this 7-point discrepancy usually include reference to some common barriers, e.g., attitudes and architecture. One could very reasonably add lack of transportation to that list. The 50% figure also indicates a slight downward trend since 1986, which is further evidence that people with disabilities appear to be subject to the same contemporary influences and trends over time as those without.

Looking at the question of similarity

Once we clear away the clutter of numbers that exaggerate a difference, we are offered the opportunity to ask a new question:

If people with and without disabilities are uninvolved in faith communities in similar numbers, could it be that they are uninvolved in those communities for similar reasons?

In his book, Growing Your Church from the Outside In, author and researcher George Barna describes people who are not connected to a church, and speaks to the larger context of the unchurched.  He states, “The best chance of getting them to a church is when someone they know and trust invites them [and] offers to accompany them.”

In other words, if we assume that the reason people with disabilities are not present in church is similar to the reason people without disabilities are not there, could it be because we haven’t invited them and accompanied them?  That may be a more difficult question to come grips with than any we face as a result of exaggerated numbers.

I’ve recently read several news articles about people with disabilities, and it made me question the motivations of media coverage and how people with disabilities are portrayed.

Headlines that caught my eye were… 

http://www.foxnews.com/health/2012/10/05/teen-with-cerebral-palsy-scores-winning-touchdown-for-team/

As well as this one…

http://www.wcsh6.com/news/watercooler/article/218772/108/Georgia-high-school-makes-Down-Syndrome-teen-homecoming-king

These stories make me wonder if the person in these stories didn’t have a disability, would they even make the news? How often do you read about a person without a disability making prom court or getting a touchdown? Yes, you might read about it in your local newspaper, but would it make national news? If the person didn’t have a disability, would these stories even be stories?

Another headline that caught my eye was…

http://www.nbcphiladelphia.com/news/local/Police-Find-Trombone-Stolen-From-Boy-With-Down-Syndrome–174108601.html

My husband recently had his laptop stolen. I know we didn’t get this type of media coverage to find the person who stole it.

The media – television, radio, newspapers and the Internet – play an important role in influencing public opinion and attitudes. The choice of words, messages and images they use can determine perception and attitudes of others. It can also define what does or does not matter to individuals and the world around them.

How people with disabilities are portrayed and how frequently they appear in the media has an enormous impact on how they are regarded in society.

It seems to me when people with disabilities appear in the media, they are often stigmatized or stereotyped. They appear as either objects of pity or as someone with super heroic accomplishments and endurance. Often the disability itself is used as a hook by writers to draw audiences to the story.

Media coverage frequently focuses on heartwarming inspirational stories about people with disabilities that patronize and underestimate individual capabilities.

It is true to say that the media is an extremely important part of our everyday life, and as an industry has been critical in the dissemination of information to the mass population. But should media be focusing on heartwarming inspirational and heroic stories about people that wouldn’t make the news if the person didn’t have a disability?

I would much rather like to see the media focus more attention on tough issues that affect the person’s quality of life, such as accessible transportation, affordable health care, housing, and employment opportunities.

What do you think?