Monica Shaw wanted to donate blood. She had seen her mother, Sally-Jo Shaw, do it over the years and hoped to finally do so herself.

Yet, 38-year-old Monica, who has a developmental disability, was turned away from the blood drive for not meeting eligibility requirements.

“I wanted to help save people,” she said.

She and her mother attempted twice to donate blood and failed to navigate the required regulations, which ultimately left them with frustration and disillusionment.

In the fall, the pair was driving through their hometown of Weare when they saw a sign for a local blood drive at the fire department. Upon arriving home, Sally-Jo marked the date on her calendar. She arranged to leave work early that afternoon and had Monica’s direct support professional drop her off at Sally-Jo’s office in Concord. They drove to the Weare Fire Rescue only to be told they couldn’t donate blood if not pre-registered and were told they could not register at the door.

“She was terribly disappointed when we got turned away up in Weare, but I said, ‘That’s okay. We’ll figure it out. We’ll go to Concord,’” Sally-Jo said.

She found another blood drive, this time through the American Red Cross in Concord. She filled out the necessary paperwork to pre-register herself and Monica ahead of time. They arrived at the drive on the afternoon of Oct. 7. Monica felt ready to finally give blood and had prepped herself by drinking water.

When they checked in at the door, Sally-Jo asked if she could stay with Monica while she gave blood, since her daughter has orthostatic hypotension, causing low blood pressure when standing up or sitting down, but had been cleared by her cardiologist. They were told a nurse would come talk to them.

“We probably waited 20 minutes for that lady to come out, and I explained it to her, and she said no,” Sally-Jo said. “I advocated and said it was just a dizzy thing. It wasn’t a big deal. The cardiologist has said that she was fine to give blood, as long as she sat up slowly, had something to eat.”

Monica grew nervous that she wouldn’t be able to donate blood after all. Her mother explained to the nurse how they’d been unable to donate in Weare and how she’d prepared in advance and registered them both online for the Concord drive. However, the Shaws then learned that to donate blood, the donor has to register themself. This posed a problem since Monica could not register herself due to her disability. Sally-Jo, as Monica’s court-appointed legal guardian who has the ability to make medical decisions on her behalf, pushed back against the rule.

“As hard as I tried to convince them, they just simply said that is our policy,” she said. “She has to fill out the online registration herself and be able to answer medical family history and medical questions. ”

The Monitor reached out to the American Red Cross for comment on the eligibility requirements and was directed to contact the Food and Drug Administration.

“The Red Cross follows all FDA guidelines which are designed for the safety of the donor and the patient who may receive the donated blood,” said Red Cross Regional Communications Manager Dan Dowling.

The FDA sets federal guidelines for blood donorship eligibility. These eligibility requirements are “intended to ensure the collection of safe blood components while maintaining the health of the donor,” the FDA told the Monitor in a statement. The establishment hosting the blood drive makes the determination of whether a prospective donor meets eligibility requirements based on their ability to offer informed consent.

“For individuals with disabilities who present to donate blood, blood establishments may consider accommodations that allow the individual to donate blood that is safe for the recipient while ensuring that the donation will not adversely affect the health of the donor,” said the FDA in the statement. “Under the FDA’s regulations, the blood establishment must make the determination that the individual can provide reliable answers to the medical history questions. In some instances, a third party may assist in the interview process, for example, as a language translator or American Sign Language provider. But such a third party may not provide answers to the medical history interview questions on behalf of the donor.”

Monica and Sally-Jo left the blood drive without either of them having given blood. Sally-Jo said she didn’t want to donate that day if her daughter wasn’t allowed to. Monica described feeling “disappointed” after leaving the drive. Her mother took her to McDonald’s to try to cheer her up.

“She had prepped herself twice with her water and her anxiety and building herself up, just to get turned away because she’s special needs and couldn’t fill out her form by herself, when I have all this medical clearance by the court system and we weren’t allowed to donate,” Sally-Jo said.

Individuals with a disability can request accommodations in places such as blood drives, according to James Ziegra, a lawyer for the Disability Rights Center in Concord. He encouraged people to contact the host organization ahead of time to discuss their requests, although accommodations can also be requested at the door.

“A person can still request an accommodation and the organization would have to consider it even if they’re unable to grant it,” he said.

If someone is unable or ineligible to donate blood, there are still multiple ways to make a difference through the Red Cross, Dowling said. He listed options such as hosting an in-person blood drive, starting a virtual blood drive by connecting with people from afar who then give blood in their respective communities, or volunteering as a blood donor ambassador or blood transportation specialist.

The experience left Monica with a sense of rejection mirroring other instances of having been treated differently because of her disability. She sometimes refers to the blood drive when she sees a sign or something on TV that makes her think of it.

“I’m not going to do that again,” she tells her mom each time.

For more information on the FDA’s blood donorship requirements, visit https://www.fda.gov/consumers/consumer-updates/have-you-given-blood-lately.

Rachel Wachman can be reached at rwachman@cmonitor.com