Sawsan Zakaria wants to change the world. Diagnosed with neuromuscular disease spinal muscular atrophy type II at 15-months-old, Sawsan has lived most of her life as an advocate for people living with disabilities. She strives to reach her goals through her work as a blogger, actor and model.
For the first time, Sawsan attended the Women’s March in Chicago, IL on Jan. 20, 2018. She wrote about the life-changing experience on her blog and reached out to A Quarter Young to share more of her journey.
Read our full interview with Sawsan below, where we discuss the countless controversies that followed the march within the last year and her takeaways as both a first-time guest and a Muslim woman living with spinal muscular atrophy.
- What is the most motivational aspect of being a community leader and influencer?
Helping people to learn to love themselves and accept who they are makes me so happy. I like being able to teach people what it’s like to live life with a disability, while also striving to live a “normal” life.
- What about the Women’s March was so empowering?
The Women’s March made me feel inferior. It made me realize that in a world where all the ugly is publicized, there’s still good and beautiful. We are at a point in time where the US is in a political divide and it’s terrifying. At the Women’s March, every single human was accounted for and this is something I’ve never experienced before. Disabled, able-bodied, seniors, Hispanics, Muslims, African-American, white, Asian, members of the LGBTQ community, dreamers and more. All of these people came together, in one place, no matter their backgrounds, regardless of their stories. A diverse community huddled together and with every step, we appreciated and respected each other. This is what being an American looks like. It’s sad that we have to hold a one-day event to show people what being an American means. It needs to be an everyday reality.
- Why didn’t you attend the march in 2017? Why the shift this year?
Honestly, it was too cold and I wasn’t huge into politics. Granted, I am still not a huge fan of politics, but I am a fan of equality. I’m beginning to voice my opinion more. I’ve learned that if I don’t advocate for myself, I can’t expect someone else to advocate for me.
- Are there any moments from the Women’s March that left you feeling disheartened, discouraged or disappointed? If yes, please describe!
NOT ONE BIT. I wept tears of JOY.
- What type of assistance and/or access might your need when attending an event like the Women’s March?
Events like the Women’s March have hundreds of thousands of people attending and it can be very hard for me to navigate. It also doesn’t help that I’m eye-level with people’s asses so I can never see what’s going on in front of me. And if one person falls, everyone ends up falling on top me or tripping on my wheelchair, which can be dangerous for all of us. At these type of events, I need clearance to move my chair around and to see the stage.
- Since your diagnosis, have you undergone any treatment? If yes, what type? How has this treatment impacted you and your loved ones?
I have not undergone any treatment yet, but I am working on trying to get Spinraza. It’s the first and only treatment that has been approved by the FDA for my neuromuscular disease. I am so excited to start treatment! It’s a lengthy process.
- What were some of the resources and services available to you as a person with a disability who was partaking in the Women’s March?
The Women’s March in Chicago had a special entrance near the stage, specifically for people with physical disabilities, and they had about 1,000 folding chairs for me and my companions! Behind these 1,000 chairs began the mosh pit of people – a group of over 300,000! Though it does not apply to my disability, the Women’s March in Chicago also had hearing aids equipment, an ASL interpreter, a large projector with closed captioning and manual wheelchairs for people to temporarily use. This was the most accessible outdoor event in Chicago’s history. Truly amazing.
- You grew up in a Muslim household and have written about how a woman read a passage from the Qur’an at the start of the Women’s March earlier this year, highlighting that we are all one. Why was this passage so important for you to hear at the march?
Growing up, I always felt that people wanted nothing to do with my religion because it was too extreme or because it simply wasn’t anything like the religion they have or it was too conservative. This part of the event helped me realize that there are people out there who respect my religion and my family. After 9/11, my entire family has continued to experienced racial discrimination just because we look Middle Eastern. The Arabic language also carries a negative stigma with it, and a lot of people do not respect the language overall because of how our people are portrayed in traditional and digital media. It was amazing to see no one scoffing or booing or judging when a part of the Qu’ran was recited in Arabic during the Women’s March in Chicago. I’m so grateful for this moment.
- As a woman with a disability, what did participating in the Women’s March mean to you?
It meant making a point. Being a Muslim woman with a disability, I have a lot of bottled up feelings about society. Many people with disabilities may be afraid to speak up or don’t believe that change is possible or don’t know who to approach to start making these changes. That’s why I went to the Women’s March in Chicago. The disabled community still has a very quiet voice and it was time for me to turn up my volume.
- Though there was a lot of positivity and change that came out of the Women’s March in 2017, there was also a lot of negative stigma surrounding the protest. Many felt that the majority of marchers included privileged, white women who would not attend other protests thereafter, like those organized by Black Lives Matter. There were also many assumptions made that people who marched were not going to make change after leaving the protest – as if they attended for the Instagram photo and to join the conversation, but were not committed to long-lasting impact. Did any of the chatter at the 2018 march reflect this side of the event’s reputation?
You know, I honestly believe that any person who decided to come out to the Women’s March had a purpose and left feeling empowered. Talking about politics and combating social norms puts a lot of people outside of their comfort zones. I was one of those people. Indeed, I too couldn’t wait to take a great Instagram photo and I’m not even going to lie about it. But, I didn’t realize how much of an impact the march would make on my life and my beliefs. Many of us can agree that change needs to be made and inequality is at the forefront of our society. It takes strength and courage to stand in a crowd of 300,000 and stand up against society’s injustices. I truly believe the experience will be something all attendees will hold with them forever. For some, it may take them years to appreciate the energy and change that comes with the Women’s March, but, as a supporter, they are choosing equality.
- The Women’s March launched as a way to protest Donald Trump’s inauguration in 2017. The 2018 march was about continuing to protest his leadership. As an American, a woman of colour and a person with a disability, what type of positive change have you seen in your community since the Women’s March movement began?
I see a lot of people finally standing up. There are so many different kinds of people and beliefs and we’re all sharing one space. It’s time to start treating this shared space like we’re each a part of it.
- Though Trump is a danger and a threat, his racist, prejudice, sexist, transphobic, homophobic and closed-minded perspectives are not new ideologies. His bullying, predatory nature and misogynistic attitude have just lifted a veil. How do you think your work and community involvement help combat these ongoing issues?
It all starts with self-love. Being able to love yourself is one of the hardest living tasks, in my opinion. Once a person starts to love themselves, they begin to see they’re worth. And once someone begins to see their worth, they start to realize that they deserve to be treated fairly. And nobody, not even the president, can take that feeling away from you. Showing people that they are the driver of their own car (life) will help them stand up for what they believe in. It all starts with you.
- You’ve written openly about your experience with better understanding feminism and how you recently realized that you have always been fighting for equal rights, even in your own home. After completing the Women’s March this year, what next steps will you make to ensure you’re taking action, even after travelling through the streets?
I will continue to post on social media and my blog. I will attend marches and protests, as well as talk about the injustices and inequalities we experience. I will continue to show people that, disabled or not, I am strong. I have a voice and it will be heard.
- A signature accessory for the 2017 Women’s March was the Pussyhat – a controversial hat that has been criticized for excluding people of colour and people who identify as transgender. Did you see many women wearing the Pussyhat at the 2018 march? What do you think about this accessory?
I did not see many people wearing these hats. The hat is of course very controversial because the Women’s March was created to get people of all identities to protest Trump. Uniting to march against him and the ideologies he represents makes a powerful statement, but I understand how the hat can be perceived as being exclusive and not a representation of equality. Not everyone who identifies as a woman has a vagina. I truly do not believe the hat intends to exclude people who identify as transgender or women of colour in any way, though we, as a society, must be more cognizant of all people. We need to be inclusive and reinforce equality and equity in all that we do. With that said, the hat is a direct stab against Trump’s, “Grab ‘em by the pussy,” comment, and the accessory can make for a powerful visual statement.
- I saw a lot of uterus pins on Instagram after the 2018 march came to an end. Did you encounter any? What type of impact, positive or negative, do you feel a pin of this nature would have?
I love the message the uterus signs and pins send. I believe it sends a positive message that we are in charge of our own bodies and should be involved in the discussions about women’s health.
- Of course when hundreds of thousands of people unite and march, voices are heard and sparks are ignited. However, there are many voices in marginalized communities that haven’t yet been heard. How do you hope your work as a model, actress and disability activist supports these unheard voices?
My main goal is to educate people. I want to show various audiences that individuals with disabilities are humans who have hopes, dreams, beliefs, feelings and abilities. There are many people who don’t understand what it’s like to live with a disability. Society has created these incorrect, negative stigmas that only represent very slim percentiles of people living with disabilities. The spectrum of disability is so large and unique in every way and it truly cannot be generalized. I also want to show the community that having a physical disability does not mean my intelligence or abilities are limited. If I can’t physically do something, I will find an alternative way to get the job done.
- What advice would you have for other marchers, like yourself, to ensure they’re continuing to work for a better future and gender equality and equity?
Change is coming and if people stay quiet nothing will transition. A powerful quote from Channyn Lynne Parker, a transgender activist who spoke at the Women’s March, reads, “No one is coming to save you from Trump. The best way you can fight him is to get to the polls and vote. Your silences will not protect you. The only thing more frightening than speaking your truth is not speaking at all.” Your voice matters. It’s up to you to speak your thoughts, because no one can read minds.
Thank you Sawsan for openly sharing your experiences at the Women’s March in Chicago and highlighting your perspective on the movement. We’re honoured to showcase your story on A Quarter Young and are excited to see what 2018 has in store for you!