Growing up, I always saw my Grandma Ann as just my Grandma. She had MS and was in a wheelchair, but to me that didn’t define her. She was the woman who wrote stories for me and who used to have a hoist that I would attach my Barbies too and send them around the room. I didn’t see her disability, but I know that for a long time that’s a lot of what she saw in herself and was sometimes the only thing other people could see when they looked at her.
I first encountered Sylvia through the power of Instagram. When I looked at her profile, I saw her beaming smile in photos taken at amazing locations across the globe, places most of us only dream of going to. I saw a woman going on adventure after adventure, meeting so many new people and sharing her ideas with the world. I didn’t notice the wheelchair at first because there was so much more to her photos, her journey and herself than the fact that she is a wheelchair user. I guess that’s the point she’s trying to make.
Sylvia is the kind of woman who isn’t defined by being a wheelchair user, the type who uses her diagnosis as a way to help others and challenge stereotypes all whilst living her life to the full. Sylvia has had two travel books published and has written for major publications like The New York Times. She is an Airforce Veteran, she won Miss Wheelchair USA in 2016, is a drug war analyst and public speaker. She is not simply someone with MS – she is a million and one things as well as being a person with MS. In short, she’s the kind of woman I’d have loved to have shown to my Grandma.
People like Sylvia and the work she does to normalise disability and to make people aware of how the world can become more ‘user friendly’ are so, so important. I’m not saying the world is perfect now, but from being a child and seeing how my Grandad used to transport his own makeshift ramp everywhere to ensure my Grandma could access even the most basic of places, I have seen an improvement. I guess that’s down to people like Sylvia travelling the world, pointing out the good and the bad, showing the world that there is more to a person than a diagnosis and showing people like my Grandma that life doesn’t end because of a diagnosis. For that, I can only thank her.
First of all, thank you so much for agreeing to this interview. In your own words, how did your MS diagnosis come about?
In August 2003, I lost 75% of the vision in my right eye, also called optic neuritis. This is a common presenting symptom of MS, although all of my MRIs were clear at the time. Over the next two years, I started experiencing more neurological symptoms. I was finally diagnosed in January 2005.
How do you choose to view your MS and the impact it has on your life?
I have a pretty good relationship with my MS, although I get frustrated at times with my body when it doesn’t cooperate. If it wasn’t for my diagnosis, I wouldn’t be where I am today and providing a service for fellow wheelchair users. I feel very happy and very fulfilled, so I can’t complain.
What kind of reaction do you get from people when they see that you are in a wheelchair or find out that you have MS?
I almost enjoy it when people find out I have MS and say, “I’m so sorry.” I always think to myself, If they only knew…
They don’t know I travel all over the world in a wheelchair, and almost always by myself. They don’t know my travel writing has won awards, or that I run two small businesses and a nonprofit. They don’t know I’m a top expert and author on border security, or that I’ve been on TV more times than I can remember. They don’t know I’m a veteran, or a single mother to two amazing boys who inspire me to be the best me possible. They don’t know it’s my mission in life to not only see the world as a wheelchair user, but to eliminate the fear so many people have of going out into it.
Those three words have no place in my dreams.
How have you found travelling with MS?
I’ve been traveling since I was five years old. I used to go everywhere in the United States, Canada, and the Caribbean with my parents so I developed a love for it at a young age. It’s continued through my whole life. Having MS definitely makes you think about how to deal with a bad situation if it arises. I have to pace myself. Many times I want to do more than my body is capable of, and I have to make sure that I eat enough and get enough rest each night so that I don’t wear myself out.
I personally found when travelling constantly that there were days I just wanted to stop, be alone and do nothing. On those days where it all feels a bit much, what do you do to help yourself unwind?
My favourite thing to do to unwind each travel day is to find a sidewalk café somewhere, order some dinner, edit my photos, and just people watch. I absolutely love to people watch in pedestrian areas in Europe. I’m also usually back in my hotel room before the sun goes down, and I really just enjoy getting into bed and watching TV.
What has travelling brought into your life?
It has helped me develop a high level of confidence, and a high degree of familiarity with my own body and my mobility equipment. Things that may have originally seem challenging at home seems so much easier knowing that I can travel halfway around the world by myself and not just survive it, but thoroughly enjoy myself.
Travelling for anyone is scary, but for a wheelchair user there is a lot more to consider when booking a trip. What would you say to someone who is considering travelling but is also a little unsure about going for it?
I would tell them to research, research, then research some more. The greatest fear for wheelchair travellers is the fear of the unknown. Getting some control of the situation by knowing as much as you can about what you could encounter helps take a lot of the anxiety out of trip planning. Besides, courage is defined as being afraid and doing something anyway, so go because life is short.
This might be a tough question but if you had to pick one place in the world that you could travel to and only that one place, where would it be and why?
Vienna, hands down. It has all of my favourite things in a travel destination: architecture, art, music, history, and amazing food.
You seem to have gone to so many incredible places, all of which are documented on your brilliant Instagram account @sylvia_longmire. Your bio says ‘no limits’ – why did you choose to include this as one of the key elements about yourself?
Other people try to impose limits on people with disabilities all the time, and that’s bad enough. The last thing I need to do is impose limits upon myself. I’m not reckless and I’m not careless, so I know what my body and what my mobility equipment just can’t do. It’s more about not imposing any mental limits on myself, and I think I’ve gotten pretty good at that. I tried to ask myself instead of why should I do something, I asked why shouldn’t I do something.
Do you think it is important for other people to see someone with a disability or an illness travelling, completing big goals, doing things that perhaps people might not consider them to be ‘able’ to do?
Absolutely. I try to consider myself as a positive representative for the wheelchair community because I think it’s incredibly important that the general public sees us, not just existing in a space but being an active part of society and the community. I actually also think it’s a good thing for the general public to see us struggling in places so they can get a tangible understanding of the challenges we face when it comes to traveling.
My last question is always similar to this one so that the reader can really understand who you are and what you are about, so as you are someone I really admire I can’t wait to read your answer to this one! How would you describe your outlook on life?
I will leave you with my favourite quote, which is by Calvin Coolidge: Nothing in this world can take the place of persistence. Talent will not: nothing is more common than unsuccessful men with talent. Genius will not; unrewarded genius is almost a proverb. Education will not: the world is full of educated derelicts. Persistence and determination alone are omnipotent.
To find out more about Sylvia, her mission and her travels, go to her blog at: www.spintheglobe.net