Winners with ALS, SMA and LGMD receive support to pursue postgraduate education
Three accomplished scholars determinedly pursuing their educations while living with neuromuscular disease are the first winners of the CMMS Deshae Lott Ministries outreach program scholarships.
“We were so impressed,” with the winning candidates, said Deshae Lott, 39, a teacher and minster from Bossier City, La., who founded the nonprofit that bears her name. “These three show great strength of mind and character. Each of them strives to maximize within their limitations.”
The winners are: Jeff Lester, 43, of Lebanon, Mo., to pursue a master’s in business administration and a master’s in finance at the University of Michigan at Dearborn; Tess Hazenberg, 23, of Ada, Mich., who is studying for a master’s degree in social work at Michigan State University; and North Carolina-based artist Park McArthur, 26, who will undertake a nine-month, seminar-based independent study program at the Whitney Museum of Art in New York City.
Lester has amyotrophic lateral sclerosis (ALS); Hazenberg has spinal muscular atrophy (SMA); and McArthur has limb-girdle muscular dystrophy (LGMD). All three require extensive assistance with daily living, and all three are college graduates. McArthur also holds a Master of Fine Arts from the University of Miami.
Lott, who holds a Ph.D. in English, established the scholarship program earlier this year as a means of recognizing and supporting individuals with disabilities who want to pursue higher education beyond college. Financial aid and scholarship opportunities specifically for people with disabilities are often lacking once they graduate from college, she notes.
Moreover, students with disabilities face extra expenses related to personal care that other students do not. Lott, who has LGMD and uses a vent, said the scholarships are meant to help defray these costs.
Scholarship recipients must already be enrolled or accepted into a graduate or professional school, and the award must be used to support an upcoming academic term, rather than current or past studies. At the conclusion of the year, each recipient is required to submit an essay on how the work they did benefitted the “human spirit.”
The scholarships are funded by fees Lott receives for conducting study groups and seminars on Christian mysticism (the CMMS in her organization’s name stands for Christian Metaphysicians and Mystics Society), although Lott emphasizes that the awards are nondenominational and nonsectarian.
|Jeff Lester, with daughter Kelsey|
“In the face of the most severe disease progression of any of the candidates we reviewed, Jeff was also the most accomplished and the most determinedly engaged in every aspect of a full and productive life,” wrote the selection committee of Jeff Lester, who received $1,000 toward online graduate study in business and finance.
Lester received a diagnosis of ALS (Lou Gehrig’s Disease) 16 years ago, when he was 26. Since that time, he married, started a family, and continued to work even as his disease progressed. He now uses a vent full time. He also has maintained an excellent academic record despite the fact that one vocational rehabilitation counselor declared his educational goals “too lofty and unreasonable.”
Lester wrote in his application: “I learned early in my journey [with ALS] that physical abilities do not define your life, because as I grew weaker physically, I became so much stronger mentally, emotionally and spiritually, which has more than offset my physical disability.”
Lester plans to use the scholarship to help him achieve his professional goals in business and finance, as well as his personal goal of being a supportive husband and father for his wife and three children. He also sees himself as a role model for how people with disabilities can overcome both their own and society’s limiting expectations to achieve their goals.
Hazenberg, a psychology major at Calvin College in Grand Rapids, Mich., received $500 toward her study for a master’s degree in social work from Michigan State. Hazenberg has type 3 SMA and uses a power wheelchair.
While in college, Hazenberg served as a resident assistant in a women’s dormitory and as a member of the Accessibility Advisory Committee. Lott said Hazenberg’s recommendation letters were outstanding, citing both her strong academic record as well as her ability to reach out to people and put them at ease.
Hazenberg wrote in her application: “With a growing number of experiences and classes under my belt, including a study-abroad class focused on Disability Studies, I became chiefly interested in the idea of someday pursuing work as an advocate for persons with disabilities. It is my hope that I will be able to make a change in the perceived lower value of individuals with disabilities, not only in the minds of those living with disabilities through clinical practice, but in the mind of the public as well.”
Already an accomplished artist, Park McArthur is the first student with a visible physical disability to enter into the prestigious Independent Study program at the Whitney Museum in New York City. McArthur, who received a $500 grant, uses a power wheelchair and requires assistance with numerous tasks of daily living.
McArthur graduated summa cum laude in 2009 with a Master of Fine Arts in sculpture from the University of Miami. During her 9-month, seminar-based independent study program for artists, curators and critical theorists at the Whitney, she plans to examine the relationship between public and private perceptions of disability in the context of the “disability rights revolution” that occurred after the passage of the Americans with Disabilities Act 20 years ago.
As McArthur wrote in her application: “How do I as an artist whose realities challenge barriers of structure and stereotypes change the expectations of revolution and culture to create new models for civic activity? For example, can I use my physical weakness as a source of vitality and creativity in a culture that prizes strength and independence? What does the raised fist gesture of political solidarity look like if one cannot raise one’s fist?”
Grants for in-home care
Lott’s nonprofit also is offering grants to people with severe physical disabilities who want to stay in, or return to, their homes, rather than an institution. The amounts offered are small — $250 to $300 — not only because the organization doesn’t have much to give, but also because Lott doesn’t want to jeopardize benefits and services, especially health insurance, that people currently receive.
For more information
The deadline for applications for scholarships is July 1, and the winners are announced around Labor Day.
Applications for quality-of-life grants are accepted on an ongoing basis and are decided within 6 to 8 weeks. More information, including application forms and how to make tax-deductible contributions to the scholarship and grant outreach programs, can be found at www.deshae.org/cmms, by e-mailing Deshae at email@example.com or calling (318) 741-0781.
Jeff Lester’s new website is http://getjefflestertograduation.com/.
Tess Hazenberg may be reached at firstname.lastname@example.org.