Monica Shaw wanted to donate blood. She had watched her mother, Sally-Jo Shaw, do it over the years and wanted to do it herself. Monica, 38, has a developmental disability and was turned away from the blood drive because she did not meet the eligibility requirements. “I wanted to help save people,” she explained.
She and her mother attempted to donate blood twice but failed to navigate the necessary requirements, leaving them frustrated and disillusioned. In the fall, both of them was driving through their hometown of Weare when they noticed a sign for a local blood drive at the fire station. When Sally-Jo got home, she marked the date on her calendar.
She planned to leave work early that afternoon and have Monica’s direct support professional drop her off at Sally-Jo’s office in Concord. They drove to Weare Fire Rescue only to be told that they couldn’t donate blood unless they pre-registered, and that they couldn’t 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 with the American Red Cross in Concord. She completed the proper paperwork to register herself and Monica ahead of time. They arrived at the drive in the afternoon on October 7.
Monica was ready to give blood and had prepared herself by drinking water. When they arrived at the door, Sally-Jo requested that she come with Monica while she gave blood. Monica has orthostatic hypotension which is a type of low blood pressure that occurs when someone stands up after sitting or lying down. Orthostatic hypotension can result in dizziness, lightheadedness, and fainting.
Subsequently, they were told that a nurse would talk to them. Monica became concerned that she wouldn’t be able to donate blood after all. Her mother explained to the nurse that they were unable to donate in Weare, but that she had prepared ahead of time and registered them both online for the Concord drive.
The Shaws did, however, learn that in order to donate blood, the donor must first register independently. Monica’s developmental disability prevented her from registering herself, which presented an obstacle. Sally-Jo, Monica’s court-appointed legal guardian with the authority to make medical decisions on her behalf, argued 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 FDA establishes federal guidelines for blood donation eligibility. The FDA told the Concord Monitor that these eligibility limits are “intended to ensure the collection of safe blood components while maintaining the donor’s health.” The establishment hosting the blood drive determines if a prospective donor fits the eligibility requirements based on their capacity to provide informed consent.
Monica and Sally-Jo left the blood drive without having donated blood. Sally-Jo stated that she did not want to contribute that day because her daughter was not permitted to do so. Monica said she was “disappointed” after leaving the drive. Her mother took her to McDonald’s to try to cheer her up.
Unfortunately, Monica is not alone. According to a 2018 estimate from the National Council on Disability, about 1.3 million people in the United States are under guardianship. They include elderly Americans who are unable to manage their affairs, as well as a large number of younger people, some of whom have intellectual or developmental disabilities.
Adults under guardianship can’t choose where they live, which doctors they see, what medications they take, or what care they get even if they express their opinion. Some studies show the number of persons living under guardianship has increased more than threefold in the last three decades.
Placing an adult under guardianship involves the completion of papers proving that a person is legally incompetent. This is a a procedure in which the ward (the person who has a guardian, and who the court has declared legally incapacitated) has little to no participation.
There are some alternatives available, including supportive decision-making. Supportive decision making enables disabled people to pick who will assist them in gathering and understanding information, making decisions, and communicating those decisions to others. It protects a person’s right to make significant life decisions for themselves and to have those decisions respected by the other people they chose.
All disabled people should be able to make their own decisions about their lives if they are able to do so. Even under guardianship, people are still human beings.
Sources:
Alternatives to Guardianship and/or Conservatorship.” Alternatives to Guardianship and/or Conservatorship | Maricopa County, AZ, Maricopa County, http://www.maricopa.gov/5271/Alternatives-to-Guardianship-andor-Conse.
Kim, Michael J., and Jennifer Farrell. ‘Orthostatic Hypotension: A Practical Approach’. American Family Physician, vol. 105, no. 1, 2022, pp. 39–49.
Morris, Amanda. “Britney Spears’s Case Calls Attention to Wider Questions on Guardianship.” The New York Times, The New York Times Company, 10 July 2021, http://www.nytimes.com/2021/07/10/us/britney-spears-conservatorships-guardianships.html.
Wachman, Rachel. “Monica Shaw Wanted to Give Blood. Her Developmental Disability Prevented Her .” Concord Monitor, Newspapers of New England , 26 Jan. 2025, http://www.concordmonitor.com/blood-donation-accessibility-disability-rights-nh-58749609.