“Look beyond my disability”: Marking the International Day for People with Disabilities
Across Amdocs, countless employees are coping daily with the challenges, barriers and opportunities for people who live with disabilities. These are some of their stories.
On December 3 this year, for the annual day of people with disabilities, the 2021 theme is ‘Fighting for rights in the post-COVID era’.
As the journey towards greater awareness and inclusion continues, the coronavirus pandemic has shuffled the cards again for many across the globe. The stories below, from employees of Amdocs, shed a personal light on the challenges the past year has introduced, and the unique joy of overcoming them on a day-to-day basis.
Supporting a child with a hearing impairment
Michal Avisar, software support team lead, who’s been with Amdocs for 17 years, is the proud mother of three, including a 16 year old wonderful deaf daughter. “When my daughter Maya was 2 years old, she didn’t speak at all. We started doing hearing tests but she has liquids in her ears so there were no conclusions. Finally we had a special test called BERA and understood her inner ears are not functioning. This is when our long journey began - doing lots of tests, having two cochlear implant head surgeries at age 4 and 8, with long periods of training and hearing rehabilitation.”
- What is the most powerful lesson you’ve learned to date?
Always set high expectations and don’t treat her as different. Maya knows today she can do everything and be anything she wants. - What do you hate being asked?
I hate the fact that people still relate between being deaf and your mental abilities. - How can people in your environment best support you?
Best support is to ask us directly what Maya has on her ears (external hearing device) and don’t be shy. We are not ashamed to speak and explain. - What do you want people to know about living with a disability?
Although Maya is using hearing to communicate and living in the hearing world, she will never hear like us. Our brain is doing amazing work constantly such as reducing backwards noise, focusing on the current speaker but for her it’s always an effort to keep up with our hearing world. - What’s next on your bucket list, and how close are you to accomplishing it?
Maya is a normal teenager, learning in excellent high school bio-technology and physics. The sky is the limit for her. I’m waiting to see what she will choose to learn in University. - Why is “International day for persons with disabilities” important today, more than ever?
It’s important to understand what the abilities of a deaf person are, and their difficulties, but also to look beyond the disability and see the beautiful person itself.
Thriving after tragedy
Aurora Resendiz Ramirez, DB specialist, joined Amdocs in the past year. “When I was 16 I lost my leg in an accident, it was really a very unfortunate day at that age. After a lot of rehabilitation and support I was able to use a prosthesis. I had to cope with a lot of teasing and rejection but I was able to move forward, and I learned not to rely on the comments of people in my environment, and to accept myself. That’s when I was able to exceed my own expectations. Today, I have a beautiful family and a great man by my side. I have learned many things throughout my life, but above all is to appreciate what you have."
- What is the most powerful lesson you’ve learned to date?
To accept myself and trust myself more. - How can people in your environment best support you?
So far only morally. Physically I try to do everything myself. - What do you hate being asked?
Nothing bothers me, you can ask freely. - What do you want people to know about living with a disability?
Living with a disability is hard both physically and socially, but one must learn to cope with it. The environment can help by being more empathetic. - What’s next on your bucket list, and how close are you to accomplishing it?
To be able to buy a high-performance prosthesis. In order to do that, I need to raise a lot of money (I keep collecting). - Why is “International day for persons with disabilities” important today, more than ever?
The objective is to promote the rights and well-being of people with disabilities in all areas of society and development, as well as to raise awareness about their situation in all aspects of political, social, economic and cultural life.
Coping with a spouse’s chronic illness
John Kelty, software development team lead, has been with Amdocs for 14 years, and is the father of two sons. “My wife Julie has been sick with the chronic illness myalgic encephalomyelitis (ME), which is sometimes known as chronic fatigue syndrome, for about 6 years. ME drastically reduces a person's physical and cognitive energies. And when people with ME push past their new energy restrictions, they can experience a worsening of symptoms. On her best days if she avoids things that are really tiring to her like driving (because of the visual stimulation) and group conversations she can have maybe a 75% normal day. On her worst days, she will spend 95% of her waking hours resting in a reclining chair, with sunglasses on to reduce the light, and probably feeling like she has a bad cold. Some people with ME are much better off and can work, given an environment where they can take breaks and even last-minute time off as needed. Others can barely get out of bed. Few people with ME ever fully recover. With my spare time, I spend time with the kids, running what errands I can to help. I like to ski and read, and we raise chickens and a guinea fowl on our 2-acre property. I spend a lot of my non-work time volunteering as lead of the Colorado chapter of MEAction, a group that supports and advocates for people with ME in my state.”
- What is the most powerful lesson you’ve learned to date?
With enough accommodations even people with major physical, mental or cognitive limitations can accomplish great things but it is important to respect health and energy limits to not push beyond anyone's healthy limits. Personally, I've learned I have a lot of skills I didn't think I could master. For example I've successfully advocated with my state and US members of Congress for more awareness and funding and have coached others on the process. - How can people in your environment best support you?
People with ME and other similar illnesses have weakened immune systems and are more susceptible to COVID-19 and can suffer much worse and longer disease courses despite vaccines. I deeply appreciate people being vaccinated and wearing masks because it allows Julie and others with these sorts of diseases to more safely and freely be in public and while keeping their risk more at a minimum. Our family and friends give Julie the space to make last minute decisions to attend or skip get-togethers or to come for shorter times based on her health that particular day. - What do you hate being asked?
If my wife has tried some therapy or treatment. And we hate most of all phrases like "but you look normal" or "I'm always tired too." - What do you want people to know about living with a disability?
"Invisible Disabilities" like ME are not rare and people with such conditions are usually at their very most healthy when they do see others so it can be deceiving for others who do not see the days where they can do very little. They are every bit as driven as anyone else and so are not pretending their symptoms no matter how healthy they look. If anything, they pretend to be healthy when they are still feeling sick. Julie would desperately like to be able to return to a job. Proper rest and pacing of activities is critical. - What’s next on your bucket list, and how close are you to accomplishing it?
I'm working with other volunteer advocates in Colorado to try to pass state legislation to create a taskforce to study long-term COVID-19 in Colorado, which in some forms is very similar to ME. We have some state Representatives and Senators who will sponsor the legislation if a health agency will endorse it but there's a long road ahead from there. - Why is “International day for persons with disabilities” important today, more than ever?
Many COVID-19 survivors do not get better even after several months but become "long haulers." Some of them will develop serious post-viral illnesses including but not limited to ME. If someone who had COVID-19--even if it was a mild case several months ago--seems more tired or less focused, has more headaches, or has other physical or cognitive issues that come and go, this could be why, and they should be encouraged to rest and pace themselves as needed to avoid worsening symptoms.
Surviving and overcoming cancer
Uri Granot, global security officer, joined Amdocs 10 years ago. “One year after I joined, a tumor was found in my brain. During the removal surgery I suffered from a hemorrhage in my brain and the effect was similar to that of a stroke (my entire right side was paralyzed and I couldn’t speak at all). I was hospitalized for 4 month and re-learned how to talk and how to mobilize my right side. Today, 9 years later, my speaking ability has improved dramatically, and I’m able to walk, but my right hand is still paralyzed. I’m coping with this situation on a daily basis in my personal life and at work.”
- What is the most powerful lesson you’ve learned to date?
Never give up - even when you are at your lowest state. - How can people in your environment best support you?
Look beyond my disability and don’t feel sorry for me. - What do you hate being asked?
Be straightforward, and don’t hesitate to ask me anything. - What do you want people to know about living with a disability?
That the disability is always there, even when we’re having fun... - What’s next on your bucket list, and how close are you to accomplishing it?
To be able to run again...I’m halfway there. - Why is “International day for persons with disabilities” important today, more than ever?
Knowledge and acceptance, look beyond the disability and give everyone an equal opportunity.
