Hi, everyone. Thank you for joining me on my journey. I hope you will enjoy reading about my life, just as I’m excited to finally share my story with all of you. I hope you will learn something by reading it and have the courage to speak up for yourself and not repeat the same mistakes I made.
My name is Esther Klang, and I’m a 29-year-old woman who has been a quadriplegic, has had a tracheostomy, and has used a ventilator at night for the past 18 years. I also have vocal cord paralysis and shallow breathing, which makes it hard for me to communicate verbally with my family, friends, and caregivers; this aspect of my disability is particularly challenging for me because people, especially my family, misunderstand me and don’t have the patience to wait until I finish speaking; they finish my sentences for me instead of asking me to repeat myself, and therefore appear to think that I’m stupid or cognitively impaired.
I live in a single-family home with my family in Brooklyn, NY, which is a nightmare because most Brooklyn homes (mine included) are small, cramped, and very not wheelchair friendly. The streets are not much better with bumpy sidewalks and broken street corners. I had a relatively typical, carefree childhood during the first ten years of my life. One winter day, my life as I knew it changed forever, and thus began my 18 years of a never-ending roller coaster of a journey of my complicated medical saga. This saga included many extended, lonely hospital and rehabilitation stays, months of chemotherapy, setbacks, and many sad and challenging moments. My journey and life would’ve been very different if I had dared to speak up for myself, and it is something that I still deeply regret.
Despite all my physical and medical hardships, my life nowadays is busy with my work and all the causes I’m active in. I spend my days working on many exciting and meaningful projects even though I don’t have a high school diploma (a gross oversight of my school and its staff, partly due to my family and me not knowing how to advocate for my rights as a student with a disability). I am involved with a lot of advocacy work, including being a disability advocate for the Christopher Dana Reeve Foundation and United Spinal Association, where I advocate for laws and changes that will open up more opportunities and make the lives of people with disabilities better and more equal.
I’m also a Traumatic Brain Tumor and Spinal Cord Injury ambassador for the Model Systems Knowledge Translation Center (MSKTC), where I share helpful information and resources about the various secondary health conditions that can occur when living with a disability. I work as a digital accessibility tester for several companies. I test websites and apps to see if they are accessible to people who use assistive technology to control their phones and computers. I also give them feedback on how to make the experience more accessible to all potential users.
I actively participate in several United Spinal groups, including the Care Support Working Group, where we discuss the alarming situation of the severe shortage of qualified caregivers for people with disabilities and what we can do about it. We also exchange tips on how to find, train, and retain caregivers. There is also the Tech Access group of assistive technology users and assistive technology professionals who get together to discuss ways that technology can help us be more independent in completing tasks in our daily lives. We aim to educate and empower ourselves and others to take full advantage of all the opportunities that technology offers and share products and ideas that can help us be more independent. We discuss all the ways we can make our lives better. I enjoy researching and learning about new products and technologies that can help me, including finding ways to help me walk again.
You may wonder why it took me all these years to start writing about my experiences over the past 18 years and what gave me the final push; you will find out the answer in a future post.