HHAeXchange recently had the opportunity to speak with Michel and Will Pocklington, a mother and son navigating the disability landscape. Michel has spent the last ten years working in homecare both as a caregiver and care manager, all while being a fierce advocate for her 15-year-old son Will, who has Down syndrome. Will is an artist, high school student, global messenger for the Special Olympics, and advocate for people with Down syndrome. In this interview, Michel and Will share insights into the disability landscape and discuss topics ranging from employment, to receiving quality care, to common misconceptions surrounding disabilities.

Michel, how do you think the disability landscape has changed since Will was born?

In many ways, things have improved, but it’s also clear to me that much work is left to be done. Overall, I believe we have a better understanding of how people with intellectual disabilities learn; some are auditory learners, some are visual, and most are a combination. Will, for example, learns best while keeping his hands busy, much like you and I might doodle. Unfortunately, because of this, sometimes he is viewed as not paying attention.

In addition, sensory issues are now more commonly understood. More people now know that some individuals get overwhelmed by stimuli like loud noises or the texture of certain pieces of clothing. Still, while more people might understand this, only sometimes is this knowledge utilized in school and work settings. For example, Will doesn’t do well in loud, chaotic settings. This environment may lead him to have a behavioral issue. When he was little, he might have run away from a teacher or even pushed another child. Yet, instead of having his environment adjusted, he was forced to navigate the loud lunchroom and then punished when it resulted in certain behaviors.

What can be done in schools to improve the experiences of students who have disabilities?

In my opinion, schools must commit to educating their staff not only on ways to teach basic subjects such as reading and math but also on how to teach social skills, cope with sensory issues, and work with folks who have behavioral challenges. If a noisy lunchroom triggers behaviors, adapt and let the student eat in a quiet area with a few friends. Behavior is communication, and I think many educators have forgotten this. Special education must be viewed as equally important as general education.

What work needs to happen to improve inclusivity?

Everything in life is a building block, and inclusivity ensures you have those building blocks. Participating in class, being invited to social activities, participating in team sports and clubs, and joining the workforce provide people with disabilities (as well as typically developing people) the opportunity to succeed. And unfortunately, due to a lack of understanding of sensory, behavioral, and mobility needs, or even the lack of knowledge people have regarding verbal skills and processing time, people with disabilities are often excluded from these essential parts of life.

If you could change one misconception about people with disabilities, what would it be?

There are so many misconceptions about people with disabilities. One common misconception I often hear about people with Down syndrome specifically is that they are always happy. The reality is that people with Down syndrome experience a full range of emotions, just as someone without an intellectual disability might experience. It is so important to recognize people with disabilities as individuals with unique personalities and complex emotions.

Can you give an example of the systemic lack of understanding or awareness?

No two people are alike, but often society approaches people with disabilities as if they are. Accommodation is not one-size-fits-all. If a business or school only provides one type of accommodation for people with disabilities, it may still exclude large groups of people. For example, schools offer various resources for people with disabilities, such as elevators for wheelchair users. But there aren’t always accommodations for things such as challenging behaviors. Without the right accommodations, people may experience harmful exclusion.

As society becomes more aware of this problem, strides have been made toward things like creating universal design environments. Universal design is the design of buildings, products, classrooms, work environments, and more that make them accessible to the maximum number of people possible. For example, a universally designed classroom can accommodate students’ varying needs and behaviors.

What are some of the ways that people with disabilities enrich the workplace?

Different perspectives improve the workplace. The more diverse perspectives you have, the more creative solutions you will receive for potential workplace problems. If everyone thought the same, there would be very little innovation.

I also think business owners who hire people with intellectual disabilities promote a more tolerant workplace. When you hire people with disabilities, it helps the entire workplace learn to be more tolerant and patient. Eliminating a person who is disabled from your workplace is eliminating someone who could contribute positively to your work environment.

As a caregiver and care manager, what do you view to be the greatest benefits personal care attendants provide?

First and foremost, a caregiver will assist with activities of daily living (ADLs) and instrumental activities of daily living (IADLs). However, what people often forget, and what is equally important, is the companionship component and emotional support.

That caregiver becomes their access to the world. It is a game changer. A caregiver can give a person with disabilities access to the community, and if they need it, they can help them practice other important skills, such as social skills. A caregiver can have a big impact on a person’s emotional well-being.

Additionally, as someone with a child who has an intellectual disability, I can attest there is a burnout factor for both parents and children, and to have someone who can come in and give them both respite while adding value is huge.

What have you learned as a caregiver and mother that would help other caregivers for people with special needs?

As a mother and a caregiver, I have learned that burnout is real and sometimes hard to recognize. You must rely on your support system and make sure you are taking care of yourself.

What resources would you recommend to someone trying to navigate the disability landscape?

Reach out to local support groups. You can find support groups through schools and local co-ops. For us, organizations such as the National Down Syndrome Society, UPSFORDOWNS, and Gigi’s Playhouse have been invaluable.

Also, talk to other parents — chances are, they will welcome the friendship and support. Go to town hall meetings and join school committees. Look to be an agent of change.

Will, what is one thing you wish other people understood about people with disabilities?

I am funny and nice and want to get married and have a family one day.

Learn More About Navigating the Disability Landscape:

Creating an inclusive culture, whether at your place of business, in schools, or in your social life requires more than words of encouragement or posting on social media during awareness months. Inclusion means adapting your environment so that everyone has the opportunity to participate and contribute. Inclusion requires action.

To learn more about how to make your work environment more inclusive, visit the Office of Disability Employment Policy.