10/28/2020 | News release | Distributed by Public on 10/28/2020 07:40
As the mother of a child with a disability, Amanda Morris savors the little moments.
Like the time her daughter Bailey, who has DiGeorge Syndrome, was playing with her little sister, Harper. The sisters were pretending monsters were in their attic, and they used magic wands like Harry Potter to turn them into pumpkins.
'That imagination and play during the day is such a joy,' Amanda said. 'We don't take that for granted. We soak it in.'Bailey Morris, 6, has DiGeorge Syndrome, a condition where a small part of chromosome 22 is missing. 'Bailey is the kindest, sweetest loving person,' said Bailey's mom, Amanda. 'She's so pleasant. She's a rule follower and never gets into trouble. She's super awesome.'
When Bailey was born, she wouldn't nurse and didn't gain weight. Doctors labeled her as failure to thrive. She had speech and walking delays.
Something was wrong, but doctors couldn't provide a definitive answer.
When Bailey was 18 months old, a geneticist diagnosed her with DiGeorge Syndrome, a chromosomal disorder that results in poor development of several body systems.
'We had a list of 180 things that could be wrong with an 18-month-old baby who couldn't speak for herself,' Amanda said. 'It was intimidating and scary.'
Although Bailey's diagnosis brought clarity and a better understanding of her situation, Amanda wondered, 'How am I as a mother going to help her overcome these hurdles and help her live life to the fullest?'
Enter the power of networking.
A mutual colleague introduced Amanda to Jennifer Hoyt, whose daughter Natalie was battling a myriad of medical conditions, including respiratory and auditory issues.Natalie Hoyt in the pediatric intensive care unit in 2018. Natalie was born with a multitude of medical conditions.
Natalie was born without her left ear or left ear canal, and her right ear was malformed. Due to respiratory and swallowing issues, Natalie required a feeding tube to safely eat. She also has congenital malformations affecting her spine, ribs, intestines and several other organs.Jennifer with her daughter, Natalie. Natalie hears uses a hearing aid on a headband that vibrates sounds into her cochlear. When she's older, she'll have a similar device permanently implanted into her skull. 'She's an amazing kid, you wouldn't know she has all these issues just by looking at her,' Jennifer said. 'But it took a lot of therapy intervention to get her to this point.'
Amanda and Jennifer quickly bonded, connected by their children's disabilities.
This connection helped foster ConocoPhillips' newest employee network, ABLE, which supports employees with disabilities and employees who have family members with disabilities.
'We wanted to start this network to provide people with a place to turn when they need support and information regarding disabilities for themselves or their loved ones,' Jennifer said.
Amanda was relieved to have someone to talk to who was going through similar life challenges.
'I thought to myself, 'she gets it,'' Amanda said. 'When we discussed creating a network, I quickly reflected on the struggles and tears that I had experienced as a mom to a disabled child.'
With the support of Vinit Rajani, the trio collaborated with Human Resources to make the group a reality. A milestone for ConocoPhillips, ABLE's launch marked another addition to its array of employee networks that champion diversity and inclusion.In addition to being on ABLE's steering committee, Vinit Rajani is a co-founder of the nonprofit Spirit of the Pack, inspired by Kate Strickland, an avid cyclist, with a mission to assist individuals living with spinal cord injuries, their families, and organizations that support them through financial grants and connections to resources to improve quality of life. In this 2016 photo, Vinit, third from left in back, and others present a check to Kayla Goldwitz, who was injured in a car accident.
On Aug. 13th, the collaborators saw their efforts come to fruition during ABLE's inaugural meeting.
The launch event featured Kate Strickland, the daughter of ConocoPhillips retiree Matt Strickland, as the keynote speaker. During Kate's freshman year at UT-Austin in 2013, she was hit by a car while cycling.
The impact broke Kate's neck and damaged her spinal cord, leaving her a quadriplegic.
Kate shared some of the challenges she's faced since her spinal injury - adjusting to a bulky powered wheelchair, accessibility hurdles, even ostracization. She also outlined how to advocate for the disabled community.
For instance, Kate said it's best to ask someone with a disability, 'What can I do to help you be successful?' instead of assuming what they can or can't do.During ABLE's first meeting, which was virtual, Kate Strickland shared her story and discussed how to better advocate for people with disabilities. Kate is a 2019 graduate of UT-Austin and is now studying law at Harvard Law School.
'When you look at me, it's easy to assume that I can't do anything,' she said. 'But that's just not true. Yes, I do things differently than a lot of people. I have to find creative solutions in my everyday life. But that doesn't mean that I can't do the things that anybody else can do.'
And language matters when you're addressing someone with a disability, Kate said, especially the word handicapped.
'Anywhere you see the word handicapped, you can substitute the word accessible,' she said. 'So, for example, instead of saying handicapped parking, say accessible parking.'
Moving ahead, Vinit said they want ABLE to feature more speakers like Kate who are willing to share their stories, as it helps to destigmatize people with disabilities.
'The way we see it,' he said, 'it's actually a lot more powerful for people to share their stories as a way to help each other. Ultimately, it just makes everybody happier and it makes this a better place to work.'
Jennifer said the enthusiasm for the new group has been heartwarming.
'A lot of people are excited about ABLE and are ready to help and be involved,' Jennifer said, 'I get choked up about it because it's a very meaningful thing for me.'
A Better Life for Everyone (ABLE) is dedicated to raising awareness and providing support, coaching, mentoring and networking opportunities for employees with disabilities as well as employees who have family members with disabilities.