Let’s Chat About … the Importance of Self-Advocacy
Living with vision loss, Tami Morehouse and Jack McCormick learned the challenging complexities of advocating for themselves so well, that they both now earn a living helping the general population with an array of social services and human resources.
But it took a lot of time and a lot of courage.
Tami began asking for assistance about two years ago when she found herself out of a job at age 55. Twenty-four-year-old Jack tried to hide his vision loss for most of his life but getting his first guide dog ended that.
Tami and Jack live with Leber congenital amaurosis (LCA) and described their journeys of learning to ask for assistance in our June webinar episode: “Let’s Chat About…The Importance of Self-Advocacy.” Sofia Sees Hope Director of Marketing and Communications Elissa Bass moderates the free monthly webinar series. Click here to view the webinar.
Self-advocacy is a cornerstone of Sofia Sees Hope and its founding, Elissa noted, but the act of self-advocacy is very personal, as Tami and Jack will tell you.
Here are their stories:
Tami Morehouse’s Self-Advocacy Journey
Tami never wanted any part of asking for help. She didn’t want to be different, and she didn’t want to stand out. Only in the last couple of years has she learned the true meaning of self-advocacy.
“It took a very, very long time for me to reach out to people and to speak up when I had particular needs, or when I needed some assistance,” she said. “I didn’t want to talk about my blindness to a lot of people. I just kind of lived my life doing whatever I could, just managing through whatever barriers got in my way, one way or another…
“I used to just joke and say, ‘Yeah, I’m just bumping along, doing whatever I do, and it always works.’ I’ve always managed to do very well for myself.”
Even back in 2009 when she made global research history at age 44 by participating in a clinical trial for a breakthrough gene therapy for LCA2 (RPE65), Tami could not conduct research, reach out to people, or search for clinical trials.
But her husband, Mike, could.
“He literally spent days, hours, years, looking for just something associated with my particular mutation that would be helpful.”
Mike continued his efforts on behalf of his wife after learning about the clinical trial because it included only children, not adults. After doctors heard Mike’s concerns, they changed trial protocol, allowing her to take part.
Tami described Mike as patient and persistent; he never gave up. During the clinical trials, Tami’s vision improved after doctors injected a human-engineered virus under her retina that gave instructions to produce a protein essential for vision.
Ultimately, Spark Therapeutics developed the gene treatment marketed as LUXTURNA® following federal approval in December 2017.
“There was nothing but self-advocacy,” Tami recalled. “There was really no one out there to help very much. …There wasn’t anybody there but him. He was doing it solely on his own. …There are more people to help you now, but at the beginning it was tough. It was tough.”
About two and a half years ago, Tami lost her job of 18 years because of budget cuts, and she then needed to be her own advocate.
“I found myself in a position where I said, ‘Oh my gosh, I need to find a new job,’ and I knew that I needed to update my skills, so that was the first little bridge.”
She knew she needed more assistance, support, information, and education to market herself.
“When I started doing that, I got a glimpse of how beneficial it is and how helpful it is to reach out and ask for that help.”
Tami works as an information and referral specialist for 211 of Ashtabula County, Ohio. The agency covers every state, Washington, D.C., and Puerto Rico and works a bit like 911. Calls to 211 are routed by local phone companies to local or regional calling centers. Tami and her colleagues receive requests from callers, access databases of resources available from private and public health and human service agencies, match the callers’ needs to available resources, and link or refer them directly to an agency or organization that can help.
She connects callers with agencies that help with a host of services, including housing, clothing, food, medicine, health care, and suicide prevention.
While training for her new job, Tami found that as she started opening up a little about her blindness, the people teaching her also opened up.
“I realized everybody has something. I realized I’m not the only one who needs help sometimes and being able to do that and to speak up for myself and talk about whatever I might need assistance with has changed my life tremendously.”
She is much more functional, successful, and independent, and a lot less frustrated.
“It was just literally an eye-opening experience for me, and I can’t believe how much it has changed my life…I feel so much more confident with those situations than I ever have in my life and it’s a huge weight off my shoulders.
“I wish I would have done it earlier, but I didn’t have that confidence and self-assuredness that I needed to do that, but I do now.”
We at Sofia Sees Hope also can attest to Tami’s strength and confidence, having known her since 2017. She now sounds like a seasoned public speaker when she presents information at national conferences, including our LCA Family Conferences in Mystic, Conn., and Philadelphia.
She also volunteers in our Family Connections program, which brings together people in the LCA and rare inherited retinal disease (IRD) community to share information and provide support. And she is a Sofia Sees Hope Ambassador, giving encouragement to LCA patients and caregivers, attending conferences, keeping up with research, and sharing stories and experiences to help others.
Time and Courage Needed for Self-Advocacy
Tami now revels in helping others get what they need.
“I love to advocate for other people. I love helping people. I love making things better for people. In my current job I find a lot of people in crisis and I’m very capable and able to speak up for people and to get them the services that they need, the program information they might need. I kind of thrive on that, otherwise, I couldn’t do the job that drives me crazy a lot of the days.”
Applying and interviewing for her new job required her to stand up for herself.
“I had to really promote myself. They’re a very kind group of people. They wanted to give me a chance, but I could tell through conversations and emails, they were thinking, ‘This is not happening. There’s no way she’s going to be able to navigate our database. Call reporting, to do the whole shebang. How is this going to happen?’
“It took a lot of time. It took a lot of conversation. It took some teaching and introducing them to software and explaining how things could work out, and how much I’ve been able to make things work for me all of my life. ‘I’m telling you guys; this is going to work.’
“They gave me the shot. I don’t think they wanted to; some of them didn’t want to. I think they were thinking, ‘Please don’t waste our time.’ But they gave me the shot and they trusted me… I’m very grateful to have this job and to have been able to get it on my own merit, where nobody had to vouch for me. I did it on my own. It was tough work. They were a tough sell. They really were.”
Before, she would have agreed with their hesitancy.
“A few years ago, I would have said, ‘OK, you guys are right. You’re probably right. I’m not going to be able to do that and I don’t know what I was thinking.’ But I learned. I learned how to sell myself really.”
People need to be tough, and they need to be brave to stand up for themselves and it pays off.
“Vision and income are the biggest things I’ve gotten from self-advocacy and by my husband. Those are the two big things…
“When you take the chance and you speak up and share something with someone or some group of people, you’re putting yourself at their mercy. You don’t know how they are going to respond, ‘Is this going to work, am I going to fall on my face here or how are these people going to react to me?’ That’s a big chance.”
Jack McCormick’s Self-Advocacy Journey
Jack hid his vision for most of his life. He lives in Ontario, Canada, and doctors diagnosed him in high school with Leber congenital amaurosis (LCA) due to a mutation in his RPE65* gene.
“I could see well enough that I could fake it in most situations,” he said. “I would occasionally bump into some things, or oftentimes I would move my head up and down to try to focus on something. I had a few quirks, I guess is the best way to put it.”
It was easier than explaining his visual impairment.
But that didn’t work so well.
“I found myself always focusing on trying to hide my vision loss and I felt shameful of my vision loss because I was hiding it. I was so focused on hiding something that was part of me that I couldn’t enjoy experiences to their fullest.”
But life changed for Jack in college when he got his first guide dog, Jake.
“I went from being someone who could hide it to ‘I’ve got this big black dog who is with me 24/7 that wears a harness that identifies him as a guide dog, which then identifies me as someone with visual impairment.’ ” (Jake has since retired and Baloo is Jack’s new guide dog.)
Over time, he realized he no longer focused on his visual capabilities.
“It was just a thing that happened to be there, and it was a very liberating feeling.”
In college, Jack founded Eye to Eye, a student club with the goal to eliminate stigma associated with vision impairments and he volunteers with Fighting Blindness Canada, including working on the 2018 Young Leaders Summit.
He graduated from Wilfrid Laurier University in Waterloo, Ontario, three years ago and works as a human resources manager for a large software company, helping solve issues for people all day long. In his spare time, he advocates passionately for inclusion and accessibility on all fronts.
Jack also is board vice chair of Canadian National Institute for the Blind for the provinces of Ontario and Quebec and serves on the Metrolinx Accessibility Advisory Committee.
He is a Sofia Sees Hope Ambassador and contributes to our quarterly newsletter with his column about navigating adulthood with vision loss.
The Joy of Advocacy
Jack is most comfortable advocating for people at work because he knows the policies, procedures and legislation required of employers and how to support people.
“I found so much joy and passion in pursuing a career that I truly find fascinating. In human resources, I get to solve such fascinating problems every single day, and it’s such a joy to be able to help people in that regard.
In a previous job, he initially felt afraid to even ask for the software he needed, but then he realized it’s a sound investment for the company.
“It’s important to understand your needs and advocate for them,” he said. “They want individuals to be as successful as they can in their roles.”
Many times, the unexpected happens when he reaches out. While receiving an award from one of the big banks in Canada, he talked for a while with a vice president. He later asked her for directions to the bus station and she offered to drive him because she was going in the same direction. He said while he doesn’t always recommend getting into a car with a stranger, he shared a phenomenal conversation with this person, who later got him a summer job through his university.
Practicing Self-Advocacy in Real Life
Dating and personal relationships pose the most challenges for Jack when disclosing visual impairment.
“It’s really hard to be on a first date and talk about vision loss and what I can and cannot see and what that means for a relationship. I certainly haven’t mastered that piece yet,” he said, laughing. “But as a young person who is dating, it’s definitely something that I always feel nervous about when it comes time to share that.”
Jack strongly encourages people with vision loss to share that information with anyone they meet who is going to be a part of their lives.
“‘By the way, just so you know, I have vision loss. Here’s some of the things I can see. Here’s some of the things I can’t see. Here’s how it impacts my life, but I still can participate fully if you keep these things in mind.’ Having that dialog makes those interactions so much more powerful from the beginning.”
He always tells his date before their first date.
“No surprises,” with dating and with work is the advice he gives. “The sooner you disclose you vision loss and talk about how it impacts you, the better that person can understand and relate.
“I try to put a really positive spin on in. I’ll say I happen to have a visual impairment; it creates some challenges like when I’m going in for a kiss, I’ve been known to miss the lips.
“It comes with some benefits, like some places give me a two-for-one deal, like movie theaters. I try and just be very jokey and confident about it so that there’s this level of comfort to speak to it, so I don’t speak to it like my vision loss is something to be ashamed of or something that can’t be spoken about, because for a relationship to be successful the person you’re dating or even a friend needs to understand how that impacts your life so that they don’t expect you to pick up on a visual cue that you’re just not able to see.”
Self-Advocacy Means Creating Understanding
It is important for people to understand any disease, including vision loss, in uncomplicated terms.
“There’s a really big power in making your rare disease relatable and finding a way to make it relatable in really simple terms,” Jack said. “By relatable, I mean something that someone can understand no matter how what your experience is. I’ve heard people who are dyslexic, not necessarily a rare disease from a genetics perspective, describe dyslexia as reading words that have jumbled letters.
“I will often describe my vision during the day as I’m always looking at things from across the room. And at night, because I can’t see anything at night, all I can see is streetlights, I’ll say it’s like I’m wearing three pairs of sunglasses out at night.”
Simple sentences describing his experience help people understand.
“They’re not going to fully understand your experience, but they can at least kind of start to imagine what that is so they can start thinking about ‘OK, so if this is your experience, how do you approach something like this or how can I make something like this better?’
“By them starting to ask those questions, it helps them start to feel comfortable including you and finding opportunities for you to fully participate in whatever it is you’re trying to do.”
Find Your Passion, But …
Jack disagreed with some advice he received along the way about living with visual impairment.
“That advice was, just because you have a disability, you have a rare disease, you have a visual impairment, etc., doesn’t mean you need to make your entire life and career about that thing. You actually shouldn’t, was the advice I was given, and I (now) wholeheartedly agree with that because at the time when I was given that advice, I was so passionate about and still am about inclusion and accessibility, I could see myself making that my career.”
Then he embraced that counsel and found he could make a much more significant impact in life.
“You’re not going to live a full life if you make your entire life be about your vision loss. You’re going to let that define you and you’re going to get really burnt out.
“Find something you’re passionate about that can be your career outside of making your vision loss be your entire identity throughout your career.”
Jack still volunteers to make the world more accessible and inclusive.
“I also think that doing that type of work, if it’s something you care about, becomes much more effective when you have the credentials, like being able to say, ‘I’m saying this as a human resources professional, that this is what employers should do to be more inclusive, versus I’m saying this as an angry person with a visual impairment, that this is what you should do to improve it.’ ”