Data For One, Data For All

Barriers to data for people with disabilities represent barriers to critical information, informed choice, and lack of participation and decision making throughout every level. (Thanks to Johan Rempel from the Center for Inclusive Design and Innovation (CIDI) at Georgia Tech, who contributed to this article.)

The importance and impact of equitable access to data cannot be overstated. Data can directly impact personal decision making, and it informs policy, research, and education from the local level through to the federal level.

The old ‘knowledge is power’ adage could just as easily be replaced with ‘access to data is power.’ As it relates to the early childhood through K12 populations, stakeholders of that data may include any number people, including parents, educators, government entities, administrators, policymakers, researchers, and students themselves.

Many individuals requiring access to various data sets will have some type of disability. According to the Center for Disease Control, approximately 1 in 4 adults in the United States has a disability: CDC: Disability Impacts All of Us. Considering the tremendous impact that the collection and analysis of data can have on the lives of individuals, providing full and equal access to that data for everyone, regardless of disability, is essential. Barriers to data for people with disabilities represent barriers to critical information, informed choice, and lack of participation and decision making throughout every level.

Making data as usable and accessible to the greatest extent possible also improves access for everyone. Time and time again, novel inventions and out-of-the box solutions originally intended for people with disabilities has increased access to information and communication to the greater community. For instance, in 1992 (not that long ago), Matti Makonen of Finland invented SMS texting specifically for deaf people to communicate more effectively. Can any of us imagine not being able to send or receive text messages today? In 1974, Ray Kurzweil, a visionary to this day, leveraged Optical Character Recognition (OCR) technology to create a reading machine for individuals who are blind, allowing them to have printed text read to them aloud. This OCR technology was quickly acquired by Xerox, sending it into the stratosphere of ubiquity and into the hands of the mainstream, which we all rely on today.

Ensuring full access to data and its accompanying applications tools is not just the right thing to do; it also makes good business sense. Full access expands the target audience, and empowers everyone, regardless of disability, to participate fully and unapologetically throughout the information-gathering and decision-making process of our respective lives, communities, educational institutions, and government agencies throughout this country.

So why does all this matter when we talk education data?

As early childhood and education professionals, we collect and analyze data to keep schools and providers accountable as well as to determine how to improve outcomes for those students and families. We know there is a wealth of data which is collected, reported, and used in our school districts, early childhood programs, state and federal agencies all over the country. Staff work hard to release data and reports regularly to provide data snapshots to meet federal reporting requirements and to advise the public of the current state of these schools and programs while being mindful of security and privacy regulations. These reports are reviewed by different stakeholder groups where we adopt various strategies, such as data visualization, to help stakeholders understand and make data informed decisions. Reporting this data from the start is a lot of work!

However, despite these efforts, it is a common challenge that even though we must seek stakeholder input from many groups for different reasons, such as target setting or program improvement efforts, individuals with disabilities often want to be part of the conversation but have a difficult time accessing and using the data currently available to provide meaningful feedback because of the way agencies commonly construct reports. Many of these reports are in formats (such as tables, charts, and graphs) which are not compatible or easily interpreted by screen readers or other assistive devices. In addition, colors used on some reports may also be difficult to see for those with certain types of vision impairments.

When these individuals cannot access the data, we lose a very important stakeholder voice in the process. By not providing proper accommodations for individuals with disabilities to access data and reports, we in the broader education space lose access to the insights of those who have lived, experienced, and overcome the very challenges, issues, and concerns affecting individuals with disabilities every day which we desperately battle and want to overcome. Every stakeholder in education, regardless of background, has important insights on how we can improve our early childhood and educational systems and processes, but we must make sure that all stakeholders can access the relevant data needed to be part of the conversation. This starts by reviewing our current reports and determining what can be made accessible to allow all to access the data so we all can equitably participate in data conversations with fewer barriers and less frustration.

I (Fred) understand this battle as I am an individual with a disability. I also am the parent of two daughters with a mild intellectual disability and two sons who are color blind. Every day, my family must address various challenges associated with these disabilities and impairments. The extra work it takes to accommodate and address the associated personal and educational challenges over the years and to fight to be part of the education conversation has not been easy or straightforward. But by taking the time to address and adapt to those challenges, the reward comes by seeing your own children delighted because someone cared enough to take the time to help them with what they needed.

If we report any data on students who are in our states, school districts, and early childhood providers, we have a responsibility as professionals to ensure we provide the resources and solutions necessary so all may be part of the broader conversation. The reward is the richer and deeper insight you will get from your data that you would not be able to get anywhere else.

If you have questions about how AEM can help, we have several data visualization and reporting experts who can discuss how to help you include all in the broader education data conversation.

Johan Rempel from the Center for Inclusive Design and Innovation (CIDI) at Georgia Tech also contributed to this article. Johan has worked in the areas of disability awareness and accessibility for over 20 years, and currently serves at the Director of AccessGA and Web Accessibility Group (WAG) initiatives related to digital accessibility and UX to higher education, non-profits, and industry across the country.