SOUTH KINGSTOWN, R.I. — Emily spells “love” with her hands. These hands are printed on cards, T-shirts, inspirational messages and other kinds of custom-designed messages in American Sign Language. They are Love Letters by Emily.
This artistic ASL creation by the 27-year-old, who is deaf and has profound disabilities, started in high school with a teacher having her spell “love” in sign language for a Valentine’s Day photo collage for her parents.
The gift inspired her mother, Carolyn Maxwell, to think about expanding the idea of sign-language gift cards using her daughter’s hands so that Emily had meaningful work she could enjoy in the present and into the future.
“We’re now in all 50 states, coast to coast, and overseas,” said Maxwell about the growth in Love Letters by Emily. In the seven years since the home-based business started, these hand-made messages by mother and daughter come with daily trips to the post office to send their merchandise, Emily’s hand signing that is photographed and all kinds of other work.
Yes, it is love that propels Maxwell to help Emily have a meaningful life, but the mother said she’s not feeling the love very much from the State of Rhode Island’s Office of Rehabilitation Services. It doesn’t provide funding, she said, to make this business a base for her disabled child’s future work and income when her parents can no longer pile their own resources into the business for her.
“The State of Rhode Island is not supportive of this,” Maxwell said. When a person turns 21, there’s often job training or other programs to aid disabled individuals in reaching full or partial independence.
“That didn’t happen with Emily. There are intellectual disabilities and communication challenges that got in the way,” Maxwell, 65, explained.
She said that when she asked for an assessment through the state Office of Rehabilitation Services, she also offered the idea of creating this business in which Emily was involved with ASL art.
“The state’s first reaction was, ‘Who would buy such a thing?’ And then at the end of actually two assessments conducted, we had a meeting and they felt that Emily was not eligible for integrated employment, which means going out into the community with the support of a job coach under their program.”
“I explained it puts her out in the community in so many ways. But it really kind of ended there,” she said.
At one point during an assessment, one state official recommended making Emily the owner of the business.
“I am on the record as the owner and sole proprietor because Emily cannot make business decisions or be held liable for them. For those reasons, we don’t want to go that route. Then it was, if you pay her a salary of $100 per week then we’ll come back and see what support can be offered,” Maxwell said.
“I said we do not often make $100 per week doing what we’re doing. We work a little bit every day of the year on this. So, I said with that criteria, that’s not within our reach,” she added.
State rehabilitation officials cited confidentiality laws prohibiting any kind of discussion — even in general terms — about Maxwell’s case and assertions.
It is a frustrating — and scary — situation that she and her husband, Brian, 64 and now semi-retired, face as they look to the future for their disabled daughter, Maxwell said.
Emily was born with CHARGE Syndrome, which has resulted in a congenital heart defect, vision impairment, deafness and other significant chronic conditions.
Carolyn Maxwell, a former teacher, has dedicated herself to working with her daughter in ways that have complemented specialized schooling the state funded for many years until Emily reached 21 several years ago.
A child filled with zest and energy, she couldn’t be left at 21 years old to a life with meaningless activities or simply time-occupying tasks until the next day and repeat them again, Maxwell said.
Maxwell had been considering what to do. Emily had been working with a teacher for the deaf for 10 years. Then one Valentine’s Day during high school Emily came home with a collage frame of four photographs — one for each letter — of her signing “love” in ASL, Maxwell said.
“It just melted my heart. I started showing it around, and it’s not just because I’m Emily’s mom, but people were really responding to this in just a really heat-warming way,” Maxwell said. “I always said that was more than just a Valentine’s Day gift, but the gift of an idea.”
They market-tested the idea of “Love Letters by Emily” with Maxwell photographing Emily signing the entire alphabet as well as signing LOVE, whose words are recognizable in ASL.
“From that came the idea how can you fit signing into phrases. One of our first prints simply said (in ASL) Do What You Love, Love What You Do,” she said. “It resonated with people. People kept giving ideas and had brain-storming sessions about love,” Maxwell added.
“The first time I sent it out for printing, the printer called and said, ‘You can’t take pictures off the internet and ask us to print them.’ I said, these are my daughter’s hands,” she recalled.
“I wanted to get the idea across that this opens up the world to so many people. To be able to communicate with each other, to finger-spell love. In many ways it was to provide Emily with an opportunity to have connections with people she ordinarily wouldn’t be able to have,” she said.
The internet opened up that vista for the both of them, she said, adding that she created a site on Etsy, which is an online sales site that connects independent sellers with buyers looking for specialty, craft and vintage items.
“Emily came home from school and she hit the button that made everything go live and within moments we had a red heart from someone in Ankara, Turkey. From there, her hands now are in all 50 states, in Australia, a few in England, Italy, France and Canada,” she said.
“As well, it brings the deaf community close together. Many people who are born deaf or use sign language as primary communication are looking for ways to express themselves in their natural language. That’s the response we get from Emily’s sign language,” she said.
Also the business now gives Emily opportunity for involvement in the community, such as making raffle items, messages for deaf education and ASL classes and special solicitations that benefit causes such as an animal shelter and Bikes for Girls in Vietnam, Maxwell said.
In addition, design work, packaging of the products and preparing them for mailing also qualifies her and the business for the state-required integrated employment and working in the community, Maxwell claims.
Even if the state views the business more as a family operation than one intricately involving Emily, Maxwell said, parents should be assisted in the efforts of taking care of their disabled children, especially as parents grow older and fixed incomes become their budget.
“In many states that does happen. There are people in Rhode Island that are interested. If Emily becomes the face of that, it is possible to accomplish something in the future that will benefit many,” she said.
In response to questions about the qualifications to satisfy for state assistance, Alisha A. Pina, chief public affairs officer for the state Department of Human Services, would not discuss Maxwell’s situation, saying that “we are not permitted to provide the specifics of an individual case due to confidentiality laws…”
The business, no matter the state’s lack of support, still provides a critical meaning in Emily’s life, said customers who have purchased cards and other customized gifts with her fingers signing a message for an office, classroom or graduation congratulations.
Julie Romero of Kingston said, “If she doesn’t do this, what will she have to do — not much. Her mother is just a force, she has a vision. She has worked very hard to make that business happen.”
Debbie Fletcher, the special education teacher who worked with Emily through elementary, middle and high school, and who inspired the idea for Love Letters by Emily, agreed.
“Carolyn and Brian have also been incredible advocates for Emily, always looking to the future,” she said.