Community Spotlight: Doug McCullough

In 2014, Doug McCullough gave a TEDx talk at a Johnson & Johnson event in New Jersey that focused on disability inclusion in the workplace. His speech, A Billion People in the Shadows, represents the 1 Billion people worldwide who are affected by a disability.

Cure SMA recently spoke with Doug about his TEDx talk and disability inclusion.

Cure SMA: Have perceptions and/or misconceptions changed regarding disability, inclusion and accessibility since your TEDx talk in 2014? If so, in what ways?

Doug McCullough: We continue to make progress as a society and in the workplace. I’d say that disability isn’t as taboo or being hidden as much. Some examples that it is becoming more mainstream would be contestants with disabilities on Dancing with the Stars, the TV show Speechless and ESPN now broadcasting Special Olympics events. Specific to my company, we’ve continued to build momentum for our group for employees with disabilities. There is increased awareness and we’re at least getting a seat at the table and not being left out of diversity conversations However, I think we can all agree that we have a long way to go and disability inclusion is not progressing as fast as we would like.

CS: What areas need more work and advocacy?

DM: There are opportunities to improve in all areas. However, I think the most fundamental issue is to normalize people with disabilities and treat them like regular people. People with disabilities shouldn’t be pitied, but they also shouldn’t be put on a pedestal and called inspirational for doing routine things like going to school, getting a job, having relationships or pursuing hobbies. Too often society’s first inclination is to marginalize people with disabilities and focus on what they can’t do. However, where there is a will there is a way and when we set high expectations people almost always deliver. The disabled community needs to keep pushing society to be included in all aspects of a regular life.

CS: How do you envision the future of disability inclusion, specifically in the workplace?

DM: Diversity and inclusion has become a very popular topic in the workplace. Companies see value in having employees with diverse backgrounds and perspectives. Historically companies might have hired people with disabilities to be nice. However, it is exciting to hear of a growing number of examples where companies find competitive advantage in this area. For example, IT companies are hiring people on the autism spectrum to work in quality assurance and debug software. Their attention to detail and ability to focus is resulting in them outperforming “normal” employees. There is a growing realization that everybody has talents and strengths. It is just a matter of matching those talents with the right jobs and providing appropriate support as we would to help any person succeed.

CS: What would you tell young people who are struggling with similar insecurities regarding their disabilities and/or obstacles they’re experiencing?

DM: A couple thoughts. First, growing up is tough for everyone. People with disabilities have it extra tough but dealing with insecurity isn’t unique to disability. Everyone has insecurities! Even the most attractive, athletic and confident people struggle with insecurities. I would encourage people to push through insecurities and do the things you want to do in life. Start small and this will give you the confidence to do more and more.

Second, look for role models. You don’t have to figure out everything by yourself. One of my favorite things about the Cure SMA Conference is talking and learning from others on how they handle different obstacles. Don’t limit yourself to just learning from others with SMA. I have learned a tremendous amount by spending time with people with other disabilities through adaptive sports activities and groups like Wilderness Inquiry. Finally, there is a lot to be learned from spending time with quality people who have positive attitudes whether they have disabilities or not.

CS: What is the best piece of advice you’ve received from a mentor or boss?

DM: Always keep learning. This has nothing to do with formal education. Related to this is the advice that you can learn something from everyone you meet. Finally, I always remember my elementary school principal telling us to “turn off the TV and go outside”.

CS: What do you hope to accomplish in sharing your story and experiences?

DM: To help both people with and without disabilities For people without disabilities, they just don’t know the disability perspective and need basic education. People want to be supportive and inclusive, but they don’t even know what to think. For example, should they act sympathetic towards people with disabilities, should they offer praise, should they ignore it? The number one question I get asked when I speak is “how do I offer help to a person with a disability?”. My standard answer is “how do you offer help to a person with blonde hair? You ask if they want help and if they say no then you move on. If they would like help, you ask how to help and don’t think you know better than them what they need. Also to raise awareness to people without disabilities to start thinking about being more inclusive. For example, why isn’t this restaurant more accessible and why aren’t there more people with disabilities in my workplace?

For people with disabilities, I just want to be generous in sharing what I’ve learned. As mentioned above, role models have played a big part in how I live with a disability. If by chance someone can learn from my experience, I am happy to share it.


Doug’s quest for the perfect speech continues; earlier this year, he competed in the Toastmasters International Speech contest in addition to winning the Princeton contest, county contest and the central New Jersey regional contest. He is also working on a collection of short articles and is happy to share with anyone who may be interested. 

Do you like what you're reading?

Help make a difference in the lives of people affected by spinal muscular atrophy.

Leave a Comment

Your email address will not be published. Required fields are marked *

Scroll to Top