Do you know what it’s like to be a student in today’s education system? Do you know what it’s like to be a physically or neurologically challenged student in today’s education system? Would it surprise you to learn that there is still a significant gulf between the two?
Last year as part of my work as Accessibility Manager for Blackboard I had the opportunity to do some research into what it’s like to be a student with a disability in today’s world of education. I talked to many students. I learned a great deal. I developed some insights. I created a couple of journey maps. One for the typically developing student and one for those that have various physical or cognitive challenges. Last fall I had the opportunity to share these stories with the folks at the EDUI conference in Charlottesville VA. But I think the story itself is a powerful one and so I am sharing it here. If you’re interested in the slides that accompanied this for the formal presentation you can check it out in my storytelling work.
Blackboard’s mission is to reimagine education and over the last couple of years we’ve spent a lot of time talking with students. We’ve been focused on learning more about them, what they need, what they want, what inspires them to learn. Today I’d like to share one student’s story with all of you.
During my research I met a young man named Hassim (name changed to protect privacy). Hassim is a law student at U.C Berkeley. He has Cerebral Palsy and Balint’s Syndrome. And he’s one of only 16% of students with disabilities who continue on to graduate with a post secondary degree in the United States.
If you’re not familiar, Cerebral Palsy is a neurological disorder that generally appears in early childhood. It impacts the parts of the brain that control muscle movement and function.
Balint’s syndrome, while also a neurological disorder, is a little more complex. It impacts a person’s ability to see the entire visual field preventing them from creating full pictures. It also creates challenges in focusing the eye on an object or moving one’s hand to an object using only visual information.
Both of these conditions would appear to create very obvious limitations for Hassim. You’d see him struggle to move with out his wheelchair. He probably couldn’t hold a pencil or pen for a long time to write. He’d have a hard time focusing his eyes on specific objects. His inability to see the entire visual field would make reading a challenge. Imagine seeing every letter individually, not being able to quickly connect them into a single word. His CP would make writing notes and keeping up with school work in the traditional manner difficult. But in middle school, Hassim was once denied assistance and accommodations and often accused of cheating. He was told that he was too high achieving, meaning too smart, to actually be disabled.
Sadly, this isn’t as uncommon as we might like to think it is.
MYTH: Students with disabilities are less academically capable than their able-bodied peers.
FACT: Most disabilities don’t impair a person’s academic capability; they just change the way he accomplishes learning.
For most students, formal school starts somewhere around 4 years of age. Their parents enroll them into a school in a carefully selected school district. They are placed into a class, they start to form their first friendships, and they do the work needed to learn what the teacher’s lesson plan dictates.
This continues through middle school and somewhere around the middle of the 8th grade they, and their families, start thinking about where they should go to high-school. Is the school in their current district good enough, or do they need to move? Once enrolled, the first few years of high-school look a lot like middle school. Students continue building relationships, they start getting involved in extra-curriculars, and they continue learning “normally”. In junior and senior year, they start thinking about and preparing for college. They take their SATs, complete the FASFA paperwork and apply to college.
Once they’ve been accepted to a college or university, they need to start making choices: Which school am I actually going to go to? How am I going to pay for it? What courses am I going to take? Do I need to work while I am going to school? Where am I going to live?
For most students, college is where they start experiencing their first real life stressors. They may be moving away from home and learning how to live independently for the first time. They may start to feel the financial stresses; they feel the pressure of the academic rigors of higher education. Over the course of four years, through many failures, more successes, and a whole lot of learning they graduate with a degree.
For most of us, this looks pretty familiar. Society’s mental model of education is that of the typically developing student.
Most students are driven to attend college by one or more of the following reasons:
- They have a specific interest or passion they want to commit to.
- They think getting a degree means a better job, more money, and more independence.
- They feel like it’s an expected right of passage.
The reasons students with a disability consider continuing their education look really similar to their typically developing peers:
- They have a specific interest or passion they want to commit to.
- They are looking for a way to live a more independent life.
Sadly, most don’t believe it’s expected of them.
MYTH: Students with disabilities don’t want to go to college.
FACT: Students with disabilities want to continue their education. It’s just harder for them.
So let’s now take a look at what the academic journey looks like for a student with a disability.
The early education journey often starts off the same way. Concerned parents start researching the best schools for their child. They enroll them in a school. Hassim’s parents would have already been aware of his CP but likely not yet of his Balint’s syndrome. Sometime in primary school his teachers would identify his reading and writing challenges. That, combined with his CP, would lead them to recommend testing and an Individualized Education Plan (IEP) for him. Most schools require medical documentation supporting his disabilities to establish the IEP. So his parents have to get a battery of complex and expensive testing completed to assess his needs in the classroom. They may even arrange for at home care or assistance from private tutors to help Hassim out. The financial burden associated to all of it can be overwhelming, and sometimes counter productive as at home care can sometimes invalidate the school’s responsibility to provide support.
Throughout primary and middle school, Hassim’s IEP would be reviewed, and adjusted and amended to ensure it’s accurately reflecting his growing and changing needs. But having helper staff or different accommodations outlined in his IEP would start to isolate him in the classroom. Most students start looking for friendships in their early schooling, students with disabilities want to do the same, but they are often isolated and are acutely aware of how different they are. They may be struggling academically. They are likely misunderstood by their teachers and teased or bullied by their classmates. Throughout it all they still try and work hard to do well. Like all children, they want to please their parents and their teachers.
Disabled students begin feeling the stress of academia much earlier than their typically developing peers, often as early as middle school. Hassim told me that his favorite teachers were the ones who would talk to him on his level, treat him the same as all the other students. The ones that he liked the least, were the ones who thought they were being nice by not expecting anything of him. In his words “Not expecting anything of me is not being nice, it’s assuming I can’t do what the others can without bothering to know me.”
As students with disabilities move into high-school, their IEPs go with them. They are often still isolated and need to help a whole new school support staff to understand what they need to be successful in the classroom. They start to learn that they need to advocate for their own needs within the school, but many struggle to find allies within the school administration.
MYTH: A disabled student is easy to spot.
FACT: Some are. But, the majority of cognitive disabilities are invisible, and 60-80% of students with disabilities choose not to disclose them when they get to college.
Disabled students often struggle so much in their early education that they come to hate school. The pressures and misunderstandings lead many to feel they aren’t smart enough to go on to college. Drop out rates for students with disabilities are significantly higher than those of their typically developing peers.
The ones that do decide to pursue a post secondary education need to decide if they want the school to provide similar accommodations to what they had in high-school. If they do, they likely need to have their medical assessments redone, which costs money. Most can’t afford to do so and it’s a big factor in why the number of students not disclosing their disability is so high.
In addition to the regular pressures and rigor of post secondary education, students with disabilities also need to manage the logistics of their disability. Students with disabilities similar to Hassim’s who choose to move away from home often need to hire personal care assistants and arrange with the school to have scribes, and note takers, and other classroom and campus accommodations required by their disability. The financial burden alone often prevents these students from attending college.
This was just an example of one disabled students academic journey. The world of disability is vast and varied, and the impacts of disability on learning equally so. But comparing this generalized example to the journey of typically developing students here are a few things I’ve learned:
- The fundamental goals of all students are the same: to learn, in order live a meaningful, independent, and successful life.
- Social perceptions and support have a big impact on the ability of any student to meet these goals.
- Our society is still reactive about disability support, especially in education.
- The problem is not just the lack of awareness, it’s the lack of imagination around how to make the education system work in favor of these students.
At the end of every interview I do with students, I ask them the question “If you had a magic wand and could change anything you wanted about our education system what would you change.” Not surprisingly, there are a couple of consistent and common themes when you ask this question of students with disabilities.
First, they would ensure everyone knows that despite appearances and current societal impressions, people with disabilities have a high degree of intelligence. It just doesn’t look they way most people expect it to.
Second, they would mainstream education about disability in an effort to help reduce the isolation they believe is caused by fear and lack of knowledge.
And Third, they would put more people who have disabilities in positions to influence education policy.
So what does this actually mean for us? All of us have the potential to reimagine education for these students, to change the game as we know it and see more students with disabilities going on to higher levels of academia and achieving higher levels of success. But how do we get there?
- Start small. Don’t try to change the world. Start by trying to change one or two things about the way you think through and approach your every day work.
- Create a supportive environment for the people with disabilities you encounter. Listen to them, watch for places you can help them succeed.
- If you can, build a strategy to create a culture around inclusive thinking in your organization. Gather a few champions and allies. Share stories and build empathy. Experience and exposure drives change.
Most importantly, remember that inclusiveness does not mean everyone does the same thing the same way. It means everyone is empowered to achieve the same goals.