Ing Wong-Ward lives in Toronto, Canada with her husband and daughter, in a condo overlooking the skyline. When she was working, she was a producer for the Canadian Broadcasting Corporation. She was most recently the Associate Director of the Centre for Independent Living in Toronto.
Unfortunately, Ing was diagnosed with a terminal form of colon cancer two years ago. She is now advocating for greater access to palliative care and had written about her experiences as a palliative patient with a neuromuscular disability.
Ing was diagnosed with Type 2 Spinal Muscular Atrophy as an infant. She has always found solace and pride in being part of such a vibrant community.
We asked Ing seven questions about life with NMD. Here are her responses:
What is your favorite living with NMD life hack?
Oh goodness. I’ve never really thought about this in any real way. I just improvise as needed. That having been said, when I traveled, I would try to find a pool/lawn chair for the shower if a room wasn’t accessible. I’m lucky that my husband and attendants are able to power lift me.
Are you inspirational? Why or why not?
Eeee.... I really hate the word “inspirational”. And I’m going to quote my Twitter here, “my wheeling around, minding my own business is about as inspirational as you, walking around, minding your own business.”
If people happen to find what I do inspirational, I really hope it’s for the ideas I try to put out there about disability rights, feminism and race-related issues. I can only hope I encourage people to rethink their perspectives. Let’s leave being “inspirational” to YouTube beauty bloggers.
What’s the best and worst part of living with an NMD?
I think everything is pretty good about having Spinal Muscular Atrophy. Honestly, my life is pretty typical — at least to me. I know non-disabled people who don’t know anybody would find it weird that I need assistance to wipe my ass and such, but life has always been this way, so I don’t think about it.
In terms of the worst, it’s absolutely not about my disability. It’s about the barriers I face in a world that wasn’t built for me and continues to find ways to shut ALL of us with disabilities out. That’s the kind of thing that pisses me off. It really isn’t about my disability. It’s about how non-disabled people perceive me, based on what they think they know about my being disabled.
What quality of life issue do you feel most impacts our community’s ability to sustain or gain independence? Explain.
Access to community supports are huge to me. I live in Toronto, Canada, the largest city in our country. This means I have access to excellent healthcare that is covered by our federal and provincial governments. This includes my attendant supports. I am part of a program that enables me to receive a budget to cover the hours I need for support (within specific limits), so I can hire my own staff and choose basic things, like what time I get up in the morning.
Our public transit system is partially accessible, but still in need of significant improvement. That’s helped me to get around independently.
The problem is, this is Toronto. People don’t have consistent access to supports either in the province I live in, which is Ontario or nationally. I know far too many people still in need of adequate supports such as personal care. If you can’t get the help you need to put your socks on, how can you participate in your community? This to me is a huge issue.
While healthcare is covered in Canada, depending on where you live can affect what you have access to. Living in Toronto means I receive access to specialized care for my disability management. It’s much harder if you live in a smaller community.
What does independence mean to you?
Independence to me means being able to make my own choices about how I want to manage my life. Being disabled shouldn’t prevent anyone from living the life they want.
I also believe we really have to redefine the notion of independence. None of us are truly independent. We live in communities, have family and friends. We’re actually an interdependent species. And we should never define independence as in not needing assistance, whether it’s about needing your ass wiped or offering to help your neighbour shovel snow off the sidewalk.
While independence matters to me, I admit I fear we’re veering into a toxic notion that independence means we don’t need anything from anyone. Otherwise, it’d be a pretty sad, lonely and isolated life!
Here's a question from your friend, Alice Wong. She asks: What would you say to a young Ing about her future and what is possible? What's your advice for any young disabled person uncertain about their future?
It shows how well Alice knows me! I do think about young Ing now and then. Here’s the few things I would tell her.
1) Yes, no boy is interested in you now, but one day, you’re going to meet a handsome young man who will fall head over heels in love with you. You’ll get married and have a wonderful daughter who you love more than anything. I know it is hard to believe right now, but your marriage will be envied by many people.
2) I know you hate that your mom cuts your hair, buys you clothes from Bargain Harold’s and forces you to wear gigantic plastic glasses.
However, when you grown up, you will earn your own money to buy contact lenses and clothes that aren’t flammable. You’ll find a good hairdresser and learn to apply makeup. And people will come to you for fashion and beauty tips when you are in your 20s. Not only that, you will be told you are cool. But you won’t care, because you are thankfully out of adolescence.
3) You will have great adventures. Unfortunately, life will get hard at times. I won’t tell you what happens, because you don’t need to worry about it now, but during those hard times, people will come out of the woodwork to tell you how much you mean to them. Please know now how valuable you are. Hold that in your heart.
As for a young person who feels uncertain about their future... I totally get where you are coming from. Growing up is a messy business and way more complicated if you are disabled.
The best thing you can do for yourself is to find older adults to mentor you. You’ll find them to be surprisingly generous and they get much of what you are facing! They can help you navigate so very much.
Never, ever be afraid to be honest about what you both want and need. Living our lives openly is a radical act. Embrace that. It is hard, I know, but as the great Laura Hershey said in her seminal poem, “you get proud by practicing.” You have every right to be proud to be a disabled person. You belong to an incredible community of leaders, activists and warriors. There will be times when the fight is exhausting and angry-making, but you will draw so much strength from your community.
What’s the hardest thing you are facing right now?
Unfortunately, I was diagnosed with an advanced colon cancer two years ago. I am going to die from cancer or one of its many potential complications. It’s been very difficult to grapple with the medical system as a disabled person. Non-disabled people assume hospitals are accessible. They aren’t. And it takes a lot to explain to doctors how to best care for me with cancer AND SMA. Fortunately, all my doctors have been really progressive about trying to understand my disability and have ensured I am a partner in my own care.
I’m a palliative patient now, so accepting a new mode of care in my life has taken time. However, I am extreme grateful to have this type of support. It has enhanced my quality-of-life and mental well-being.
That having been said, I had expected to grow into old age with minor complications. My health was excellent prior to my diagnosis. And I have no history of cancer in my family, nor did I have symptoms for colon cancer. This is just random, awful luck.
It goes to show that we don’t die because of our disabilities. Most of us die as a result of lack of access to good healthcare or other conditions, such as cancer. Having SMA was never a terminal illness. It isn’t. It’s a disability. And believe me, when I say I know the difference.