Interview: How Mobility Aids Affect Our Lives
At a recent AS support group, it was suggested I write an article on how people using mobility aids are treated. I thought about it, and since I don’t use one regularly, I thought I shouldn’t be the one writing about it. That’s when I got the idea to interview two members of our group that DO use them.
Nancy and Anthony are both a part of the Mississauga support group for the Canadian Spondylitis Association. Anthony is the group leader and has had AS for many years. Nancy is a new member who has also had AS for many years.
1. What mobility aids do you use?
A: I have used a cane since the early 2000s, and a mobility scooter since December of 2019.
N: I have used a cane for stability during flare-ups for the last 27 years that I have been diagnosed with AS. In the last 2 years, I have had to use it constantly to help me walk. It’s been about 2 months now that I have had to rely on a walker/wheelchair for any mobility.
2. Was it hard for you to accept that you needed a mobility aid? How did you learn to accept it?
A: Not for me. It was difficult for my Mom to see me walking with a cane before she did.
N: I am having a hard time accepting the lack of mobility versus the aid. I’m frustrated with my body not being capable of what I could do previously, even a few short months ago. I have accepted the aids as my only means. I am still fighting for my mobility and independence hoping I will find the drug that allows me to get it back.
3. How has your mobility aid helped you over time?
A: It gives me the confidence that I can walk and will not fall over. But lately, I do not have that confidence.
N: Although resistant at first, they are the only way I have of having any sort of mobility. The aids differ as well. With a cane, I can remain independent. With a wheelchair, I obviously rely on someone else to transport and push the chair.
4. How do you find people treat you on average when you’re using your aid?
A: Because I started walking with a cane at a relatively young age, I got a lot of ribbing from my macho friends. Now, I feel most people are indifferent to me having a cane.
N: People do look at you differently! I would never have thought so, sometimes I pretend that they are wondering where in the Rockies I had my snowboarding accident!
Seriously, for the most part people are kind, courteous, and caring, Most assume I am a senior, which I guess at 55 I can qualify for, but I am not ready for. Some think a cane means you are hard of hearing and talk really loud, for the record, that is not appreciated.
5. What is the worst experience you’ve had while using your aid in public?
A: I have had to challenge someone to give up his seat for me on the subway in Toronto.
N: When I was working (up until 4 months ago), I had to take the GO train and navigate Union Station at rush hour. This was an awful experience, people had to be asked to give me their seat in the accessibility car. I've had people push me, knock my cane out of my hand and not bother to help me get it. I had a young gentleman behind me say “can you not walk faster?”. I truly believe he did not see my cane until he cut in front of me though.
6. What is the best experience you’ve had while using your aid in public?
A: Nothing really.
N: GO automatically charged me for a senior fare!
I have had truly caring people who have opened doors for me, asked me if I needed help on stairs or with my bags. I have had some great taxi drivers who walk me right to my front door, bring my empty recycling bings to my garage and retrieve my mail!
7. What should/shouldn’t people say or do to people who use a mobility aid?
A: Consider that they need mobility aids to get around and behave accordingly.
N: That’s hard to say as I think everyone’s expectations are different. While I appreciate the offer of help, others may not. Perhaps thinking we are hard of hearing is my biggest pet peeve.
8. What would you like people to know about people who use mobility aids?
A: It is not a fashion statement. I need the mobility aids to move around.
N: I would say there is no need to resist them. If you need them, use them. I know in the early days I would ask my kids if we were going out “are you embarrassed if I use my cane?”. Of course, they never were, but that was my original mindset. I also focused on walking aids, but there is a large assortment of other aids to help life with AS. Bath aids, kitchen aids and for safety’s sake, it’s easier to embrace them than risk a fall.
It’s easier to embrace them
Personally, I find that using a cane when I’m flaring is extremely helpful. I don’t need it all the time, but when I’m in too much pain to bend and walk, I use it.
What are your experiences with mobility aids?
Other than back pain and fatigue, what is the most common symptom that AS patients experience?