Sisterhood Against Stigma

Bahasa Indonesia

 

Hi, ceritaperempuan.id! My name is Stephanie. I’m a 24 year old American woman. I lived in Indonesia for a year conducting research, and while I was there, my friend Asih asked me if I’d like to write a story for ceritaperempuan.id. I wasn’t sure what to write. But then a small random interaction at the airport in Labuan Bajo helped me realize I want to write about my amazing sister, Ali.

This is my family – cute right? :) I have 2 older sisters and a little brother.

 

Lucky for me, my family came to visit me in Indonesia, and we had a great trip to Komodo Island! After the trip, we went to the airport. We went to the check in desk, and I noticed that the airline employee was whispering to another employee and staring at Ali. I was confused what was wrong, so I asked, “Apa?”. The employee asked “Dia sakit?” and pointed to Ali. I was very confused, I looked at Ali to see if her nose was bleeding or something, but I didn’t see anything. So I answered “tidak?”, and the employee smiled and gave me the tickets.

My sisters (who don’t speak bahasa Indonesia) asked me what was going on, so I explained the conversation to them. Immediately, my sister Katie said “They’ve probably never seen someone with Down Syndrome at the airport…” Then it hit me, in 9 months of living in Indonesia, I didn’t see one person with Down Syndrome! I think this is unfortunately typical; unless we know someone with disabilities personally, we might forget about this valuable, vulnerable minority.

 

My dad, Ali, and I swimming in Bali.

My siblings and I in Yogyakarta

It can be difficult having a sister with Down Syndrome, not because Ali is difficult—Ali’s one of my best friends, but because society is prejudiced. My family does all we can to support Ali. My dad fought for Ali to get adequate healthcare when she was a baby. My mom fought for Ali’s right to an inclusive education when Ali was a toddler. And on and on. I didn’t see all this work behind the scenes because I was a child or away at university, but a couple weeks ago, I became more aware of it.

I took Ali to apply for a job at a gym (similar to the job she works right now at another gym). The gym manager made a dismissive excuse not to interview her. Walking home, I was really frustrated, almost in tears. Ali asked me what happened. I told her that the manager didn’t want to interview her because she has Down Syndrome and that I was going to fix it. Ali, who is much stronger than me, simply nodded. Two days later, I took Ali back and demanded she get an interview. Ali did get an interview, and she showed her knowledge, her friendly personality, and overall, did wonderfully! Unfortunately, the manager sent a follow-up email with another irrelevant excuse not to hire Ali.

 

My sister who has helped me become a better person

Ali is really cool. She loves dancing, good food, yoga, swimming, getting a massage, and hanging out with friends. Ali works part time at a nursing home as the activities assistant and part time at a high school as a tutor and role model for students with disabilities. She volunteers at a theater, and she studies at a university. Ali is sassy and witty; she makes me laugh every day. She supports me and has shown me how to be persistent despite severe roadblocks. Most importantly, having a sister with a disability has made me a better, less selfish person.

So, you may be wondering, what are some easy things YOU can do to help people with disabilities? Here are a few ideas. 1) Be friends with them. Ask them to the movies, to the mall, to get lunch, text/call them, hang out and get to know them. They have hopes, dreams, opinions, and stories just like everyone else. 2) When you see someone with a disability, don’t assume they are babies. Talk TO them, not to the person with them. Don’t ignore them in a conversation. 3) Don’t assume they can’t do something. 4) Get involved in local organizations that work with people with disabilities. 5) People with disabilities should always be included. They are humans, just like you and me!

As I mentioned, it can be difficult having a sister with Down Syndrome. I feel discouraged often. The key is to never give up and always push people towards education, tolerance, and acceptance. I am currently working on an Op-Ed for our local newspaper :)

Thank you for reading about my sister and I. I hope you learned a bit about the frustrations and also the possibilities for people with disabilities. I hope you feel inspired.

 

All the best,

Stephanie

P.S. Ali approved this message.

Writer: Stephanie O’Gara
Editor: Ala

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