Women with SCI/D share what it's like finding love or a job, raising a family and staying healthy.
Women’s issues have caught national headlines recently with marches, rallies and protests across the country, but women with a spinal-cord injury or disease (SCI/D) face a whole host of other issues that their able-bodied counterparts will never experience.
From trying to obtain quality health care and a career to being a mother, wife or girlfriend on top of managing the physical and emotional toll of an injury or disease comes with many challenges.
The most recent study conducted in 2016 by the National Spinal Cord Injury Statistical Center at the University of Alabama-Birmingham estimates that males account for 80% of new SCI cases, which means much of the research and advancements in the field involve men.
While more women’s voices are beginning to be heard, there’s more work ahead for women to get the support they need. But plenty of women are ready to join the fight.
Confidence In Relationships
Sometimes, being a woman who uses a wheelchair is a journey best understood by other women who are in a similar situation.
That’s why Tamara Michelle Moss is starting a women’s SCI support group in Tucson, Ariz. (for information, visit tamaramichelle2.com).
Moss, 38, sustained an L2 incomplete SCI at 10 months old. Her parents were in an argument and her father, a product of abuse himself, became enraged and beat Moss with a hammer. While she doesn’t remember being injured, Moss remembers when she was taken from her mother and placed in a foster home. She says it was difficult to grow up without a female role model, but she didn’t let her rough childhood deter her ambition.
After 14 years of teaching special education, Moss decided to retire and become a motivational speaker. She also plays on the California PossAbilities Shield Maidens wheelchair basketball team.
She says two of the biggest issues women struggle with are society’s perceptions of people with disabilities and a lack of confidence, which she hopes to address at her meetings and through her speaking engagements.
When it comes to relationships, Moss says women who use wheelchairs shouldn’t feel like they have to date another person who uses a wheelchair.
“There’s a comfortability with being with someone who’s like you and an uncomfortability with being with someone who’s not like you, and maybe I’m not good enough to have a person who can walk … You can cultivate a lifestyle that’s conducive to you without feeling like no one’s going to like me, no one’s going to love me because I’m in a wheelchair and I’m different now … Be comfortable within yourself.”
Moss says some women may try to hide their bowel and bladder programs from potential partners.
“I don’t care if a guy knows I [catheter] myself, but a lot of girls feel insecure or ashamed … and those feelings tend to lead to depression,” she says. “Every now and then my bladder might explode. Oh well, life goes on, get over it. I’m not ashamed of those things.”
Moss says her support group meetings won’t focus so much on the injury itself but on what women can do to make themselves feel good again and become inspired.
Anne Robinson, above and seated right in inset, enjoys hunting and playing boccia.
“I’m big on careers and big on the right career for spinal-cord injury,” Moss says. “I truly believe how you carry yourself, and I’m very big on hygiene, anybody will accept you. What comes out of your mouth is important, your beliefs are important, your confidence is important. Your personality and your aura are more important than your wheelchair.”
In addition, Moss hopes women in her support group will feel empowered to join her in talking to lawmakers about what’s happening in the community and what needs to be done for women with disabilities, including employment opportunities and the cost and accessibility of health care.
Family & Employment
For Army veteran Anne Robinson, president of the Paralyzed Veterans of America (PVA) Texas Chapter, figuring out how to fit into her roles as a wife and mother were major obstacles.
Robinson sustained a C4/5/6 SCI in a military vehicle accident on black ice in 1999 when she was stationed in Alaska. At the time of her injury, her children were 6 and 8 years old.
“You’re used to taking care of a family, doing the cooking, taking care of the kids, doing all of it, and I went from doing it all to not being able to do any of it,” Robinson says. “Trying to figure out how to get the kids to accept you and just be involved in their lives. The challenges of going to school to meet with a teacher or go to lunch at school, or just going to a park, and the challenges of not being able to play with them … my daughter was 6 and had nobody to put her hair up in a ponytail or braid it anymore.”
For her relationship with her husband, Harry, it meant redefining their roles as parents and teaching him to handle things with which he wasn’t familiar.
“Going through rehab, you get the Yes You Can book. But there’s no guidance, OK, yes you can, but here’s how to be a mom and a wife as a quadriplegic. There’s no book,” Robinson says.
Robinson’s recreational therapist eventually got her into bowling, which built her confidence and gave the family an activity to do together. And she found other ways to entertain her kids, such as tying ropes to the back of her wheelchair and pulling them on their roller skates.
Robinson says in 2001 the South Texas Veterans Health Care System (STVHCS) in San Antonio was still a man’s world. As the only female quadriplegic in the Audie L. Murphy Memorial Department of Veterans Affairs (VA) Hospital at the time, she had to challenge the system and push for more women’s services. Just a year-and-a-half ago, Robinson says, the hospital added an accessible OB-GYN clinic. It also established women’s support groups and psychology services.
“We have much different needs than the guys,” Robinson says. “It’s usually the wife taking care of the husband and the children. That plays on the mind quite a bit. [We talk about] the challenges of getting older, because there’s not a lot of information about women and aging with spinal-cord injury, MS [multiple sclerosis] or lupus.”
Robinson says more research is needed on the differences in the aging process for women, including osteoporosis and menopause and how those factor into SCI/D. She also feels that most standard wheelchairs and medical equipment are built with men in mind.
Robinson is no stranger to the frustration of finding employment, either.
“As veterans and women with disabilities, even those women who were marching don’t realize the challenges that we face, because we have to compete with them also,” Robinson says. “Just to get into a workplace is tough. To get an interview, and then to get paid on the same level as other women is a challenge. It’s starting to change for the better overall. PVA has given women a little bit more of a platform. But it’s been a long and tough battle, and it will be for a while.”
She worked with PVA’s Paving Access for Veterans Employment (PAVE) program but gave up after a while and became more involved with the Texas chapter.
“You can slide into a receptionist job or something with minimal skills, but it’s a tough door to get them to accept you into a competitive job,” Robinson says. “PAVE is working really hard, too. But you have to challenge the men and the able-bodied women for those positions. I know we’ve had one successful placement with one of our members. But to get the particular accommodations or the schedule you need for appointments, people are very hesitant to hire you because they think they’ll have to invest a lot.”
More Support For Women
While Air Force veteran Jacqueline Baskett, national director of the PVA California Chapter, has encountered many of the same health care and employment difficulties as Moss and Robinson, she’s also had a difficult time keeping her weight in check and finding professional-looking clothes that fit her.
“My hips are really wide, but my stomach isn’t … You have bigger chest mass because you’re pushing [a wheelchair] all the time, and then to find a shirt that fits right, it’s really hard,” she says. “I have to buy something that’s really big and get it tailored. You really have to pay attention to how do I look in a chair, because you don’t want to look messy.”
Baskett broke her neck and back at C2, T12 and L1 in a car accident in 1988. Six months after her injury, she found out she was pregnant with the first of three children.
Her pregnancies and deliveries, she says, were fairly typical.
“They hurt,” she says, laughing. “The whole weight thing I struggled with, and trying to shake it and lose it, and I still struggle with my weight. When the delivery came, that was probably the three times in my life I wished I couldn’t feel down there.
“I think momma being in a wheelchair has made my kids stronger. They just learned how to fend for themselves early on.”
As a PVA national director, she believes PVA can do more to help women with SCI/D, such as adding a dedicated women’s department within PVA.
“Like, we’re learning how to put on our makeup by ourselves,” Baskett says. “No one’s showing us or teaching us because we have no one to talk to about women’s issues. We just deal with it on our own ... They [PVA] have an advocacy person, this person, that person, well, what about a woman’s SCI issue?”
In that spirit, PVA’s revamped website, pva.org, which officially launched last April, contains a dedicated section focused on women veterans’ issues.
Health Care Improvements
Air Force veteran Debra Freed, executive director of the PVA New England Chapter, says she’s seen some great advances in women’s health care services through the VA. She was stationed in Okinawa, Japan, in 1982 when she sustained an L2 SCI in a fall from a 12-foot wall.
By 1986, she was out of the military and was going to have her third back surgery at the Newington campus of the VA Connecticut Healthcare System. However, the VA at that time didn’t have separate rooms, showers or bathroom facilities for women.
“There was myself and another woman, we shared a room,” Freed says. “She and I had to use the nurses’ station, if they let us. And if they didn’t let us, if one of us had to go, they’d put a sign on the door and stand by the door to make sure the guys didn’t go in. That was a little disappointing. In 1986, they had nothing for women veterans, but now they do.”
Even with the improvements in health care, she holds the belief that male veterans receive more attention, especially when it comes to compensation benefits.
“It’s a perception, but I believe it to be true, that women veterans still get treated differently and with a lot less respect than their male counterparts just because that’s always been a societal norm,” Freed says.
Freed hasn’t experienced much trouble in the dating realm. She and her partner, Joy, have been together for about 21 years.
“It wasn’t so much about whether I was in a chair or whether or not I could walk, it was more about personalities and being able to get along and understand each other, our likes and dislikes,” Freed says. “It just worked out well that I could find somebody who could understand that I did have a disability and that while I didn’t need 24/7 care, I did need some help … As far as personal care, it really depends upon the person, what they’re willing to do for the relationship.”
Overall, Freed says women with disabilities need to stand up for themselves, do their homework and be vocal in a respectful, yet pointed way.
“Don’t do the, ‘I deserve this, I want that,’” she says. “Don’t let people push you around just because you’re one in five, maybe.”
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