Nobody wants to be Hopeless.
Because a life without Hope is a life without direction.
Sustaining a Spinal Cord Injury shook me at my core.
Up until then, I had always been so sure of what I wanted in life.I knew where I could put in the effort to achieve the goals I had set for myself. I was a strong advocate of disabled parents as I knew what they could bring to their children.
But becoming paraplegic threw me off my path.
The life I had so carefully thought out no longer resembled what I had planned for.
And I lost my bearings.
The result was disheartening as I no longer knew what I was supposed or meant to do. I didn’t even know if I had still enough energy to fight for the rights of parents with disabilities as I struggled to get mine recognized.
How could I find meaning again?
I knew I had survived to be mom to my son. That was clear to me! But I felt it had come at a heavy price: the one where I would need to forgo everything else that made me. My career. My independence. My drive. My ability to be there for others. My desire to affect change.
Being hopeless as a mom with a Spinal Cord Injury
Without Hope, people feel lost. Disconnected.
Their faith in what the future hold is crushed.
Without Hope, people stop activating. They lose their motivation and become helpless.
For years after, I would wake up every single morning wishing I had stayed in the car.
Only my son’s little voice calling ‘maman’ would bring me back to life, with the promise of a better day.
But my fear of judgment – the fear of falling victim to Disablism – where people, and maybe Child Protection would judge my ability to parent, solely based on my physical condition – paralyzed me.
I could only hide. Stay quiet as to not attract any attention.
But the more I stayed quiet, the smaller I got.
The smaller I got, the more hopeless I felt.
Path towards Hope in Rehabilitation
In rehabilitation, my Hope had to be about being able to walk again.
I held on to the dream of walking as I would hold on to a buoy in the middle of the ocean.
And I worked HARD as I would hope that my hard work would get me to stand up.
I was convinced of it, as my hard work had never faltered before.
My confidence in my work ethics led me to working harder than I ever did. I put in all my energy into my one-hour-per-day physiotherapy treatment. I took on every single challenge my physiotherapist gave me.
- Transfer without a board – no problem.
- 101 pulls ups… I can do that.
- Stand on all fours, keeping my balance (I have no control over my core) while being distracted, bring it on!
- Transfer back to my chair from the floor? I’ll work on it.
My hope to walk again was intimately linked to the amount of energy, strength and determination I put in that daily hour. I wanted to come out strong, to show my son how it is done. And truly, because I needed the WIN.
I did come out strong, but my hard work did not lead to the expected results.
I worked hard so I could walk, yet, after 6 months in rehabilitation, I still couldn’t use my legs to stand tall.
But what I did, made me stronger as a person.
- First, my transfers from my bed to my chair got easier.
- I felt better in my body and I learned how my body now worked.
- And all of that made me gave me the strength to stay an involved and active mother to my son.
It also reminded me that a goal sets us up to a path. And that path gives us meaning.
It led me to adopt a solution focused mindset, which I could use to make sure I could parent my son everywhere, ensuring common spaces would be available to us too.
Hope for the Future: Hearing the Voice of Parents with Disabilities
Twelve years later, I still train to feel strong in my body.
And I also train my voice – every day if I can.
Because my voice is also an essential tool of who I am.
- My voice can help bring a greater awareness of what a family, headed by a single mom with a Spinal Cord Injury looks like.
- My voice can also be used to influence others to see that a disability does not impede parenting.
And my path is made of everything I can do to share positive images of parents with disabilities and their children. To counterbalance all the negative images, I see and hear about. That is my greatest Hope.
If my son was writing this blog, he would tell you all the things that bug him about me.
I sing wrong. I tell him all the time how much I love him (which is quite annoying since he knows already). I make him take walks with me. I tell him to go to bed too early. And I could go on.
- None of the things that bug him about me concerns my disability or my wheelchair.
- And none of the things he likes about me concerns my Spinal Cord Injury either.
Because in truth, my physical condition it is not so relevant in my everyday parenting.
He has said and will say still though, how much he hates when Society does not provide us with the accommodations I require to live my life with him. He feels the injustice just as bad as me, as a lack of Accessibility excludes him too.
What Hope gave me
As I grew stronger in Hopefulness, I transformed my life and attained a better quality of life: one where I could fulfill my dreams of mothering AND share my story to inspire and affect change, so that other disabled parents and their families could have more opportunities to be hopeful for.
I now speak about Accessibility and Inclusion so that families headed by disabled parents do not face discriminatory practices or lack of accessibility in common spaces, including shops and retails, housing, family-oriented spaces like pools, arenas and soccer fields, and schools.
And I speak about Hopefulness and how we each can choose how to lead our life.
If we all work independently and together, we can make a difference in tomorrow’s future.
Three ways you can raise Awareness about Spinal Cord Injury:
1- Know that September is Spinal Cord Injury Awareness Month and read about Seven myths concerning Life with a Spinal Cord Injury, here from HelpHopeLive : https://helphopelive.org/september-is-spinal-cord-injury-awareness-month/
2- Share posts from disabled persons with your networks. We take the time to write our posts, and share our photos so that positive and real images of what our lives truly looks like are out there. To take ownership of the narrative that concerns us. Here is one about how I delivered a TEDx Talk on What we can learn from Parents with Disabilities: https://rollfwd.com/how-i-delivered-a-tedx-about-parents-with-disabilities/
3- Notice how you and others speak about people with disabilities. We are NOT constraint to a bed, we have agency and can decide on our own. Needing physical help does not make us incapable.
If you want to read more about Hope:
Lopez, S. (2014) Making Hope happens: Create the future you want for yourself and others.
Tomasulo, D. (2020). Learned Hopefulness: The Power of Positivity to Overcome Depression.