Maggie, 34, Spina Bifida Occulta

Maggie Lyons-MacFarlane from Fredericton, New Brunswick is the epitome of what it means to overcome a toxic environment. She didn’t listen to them. She did what she knew she could do and I’m so proud of her. Please keep on reading to hear her powerful story and her experience with spina bifida occulta.

Adam: Hi, Maggie. I’m so glad we got the chance to sit down to talk. How about you tell me a bit about yourself and the things you do in your spare time?

Maggie: Hi Adam, thank you for inviting me to take this time and share my story. I’m 34 years-old and I live in Fredericton, New Brunswick. My wife and I have been married since August of 2014, however, we have been together for about 10 years so far. I’m not in school, but I do hold a MA of Education from Mount Saint Vincent University in Halifax, Nova Scotia. I also hold a BA of Sociology from the University of New Brunswick here in Fredericton. After 11 months of unemployment with countless job applications and interviews, I decided enough is enough and started my own consulting company. My consulting business focuses on offering pre-made and custom workshops in several topics of disability-related matters. I also offer freelance consulting services for businesses and individuals.

Adam: Wow, that’s fantastic! Congratulations on the new business! So, can you tell me a little bit about your disability? Of course, please don’t feel any pressure at all to divulge more information than you feel comfortable divulging.

Maggie: So, I have spina bifida occulta, which I wasn’t diagnosed with till my early 20s. At that same time, my generalized and obvious learning issues were labelled as a non-verbal learning disorder. Prior to this, I was diagnosed with a mixed hearing loss and moderate vision impairment, which served to require a lot of advocacy in K-12 from my parents.

Adam: Why don’t you share some of the challenges you’ve encountered because of your disability and what kinds of practices you’ve undergone to really overcome those challenges that come with having spina bifida occulta?

Maggie: I received a lot of judgement, but it was through copious amounts of resiliency that I got past a lot of those poor attitudes about my goals and aims. I graduated high school and, with the help of my parents, fought to have an upgrading year created for me so I could get the credits I was missing for university.

Adam: Why were you missing credits?

Maggie: Every term, I was forced to have one of courses be a “resource period” in an isolated room by myself with teachers passing through. Apparently, they didn’t believe I was capable of completing homework on my own accord. That had a long-term effect of socializing me into believing I couldn’t meet the demands of assignments or papers without extra time. While I was getting my credits for university there was endless begging to my mother by the special education authority in this region to convince me to give up on this “unrealistic” idea of going to university. When I was applying to graduate studies years later, I hunted down the transition facilitator to ask for a character reference. Their first response was “the team had you pegged so wrong and I am so sorry for that”.  This story is a strong example of the hurdles I have jumped over to prove myself.

Adam: Wow, hurdles to say the least! Your story is a perfect demonstration of how institutions limit people with disabilities. What would you say is a common misconception about your disability? Or perhaps what would you want others to know about your disability?

Maggie: The challenge is because I have gotten so skilled at passing as not having a disability, when I do hit a challenge, it’s hard to explain why. It would be great if people could realize that chronic health and invisible conditions are real even if they can’t fully see them or understand. 

Adam: What advice would you offer to a student with your disability/disabilities?

Maggie: Set big and little goals. Stay on track but realize, when life goes sideways, that its ok to step back and breath. Realize that plans change, majors change, programs change. I started out as a Women’s Studies major and ended up in Sociology.

Adam: And if you could wind back the clock and say something to little Maggie, what would you say?

Maggie: To my younger self that spent two years recovering from a neurological virus: “You did right by not quitting despite all the W’s and F’s that ended up on your transcripts. I still believe there are some admissions folks that see the strengths in them and not the weakness that happened.”

Adam: Thank you so much, Maggie! Before we end off, is there anything you want to say?

Maggie: Adam, thanks again for letting me share my story with you. I hope there is someone somewhere that finds my story useful to them.

Adam: I know there is, Maggie. And it’s my pleasure.