On October 20, John Kelly submitted testimony on behalf of Second Thoughts Massachusetts and Not Dead Yet in support of H 3271, “An Act concerning nondiscrimination in access to organ transplantation.”
Not Dead Yet is proud to follow the leadership of the Autistic Self Advocacy Network (ASAN) on this issue. Lydia Brown of the Boston chapter of ASAN organized turnout for the hearing, and chapter coordinator Finn Gardiner testified in support of the bill. ASAN has put out a helpful advocates guide on nondiscrimination in organ transplantation, which can be found here.
John’s testimony follows below:
October 20, 2015
Chairs Lewis and Hogan, Members of the Public Health Committee:
I testify in favor of H 3271 on behalf of Second Thoughts Massachusetts and Not Dead Yet, state and national grassroots disability rights groups. We demand equal protection under the law for disabled people and oppose any discrimination justified by appeals to quality of life judgments.
This crucial bill will prevent discrimination against Massachusetts residents who would qualify as organ transplant recipients but for discrimination based on disability. We support the bill’s findings that “many individuals with disabilities still experience discrimination in accessing critical health care services,” and that “individuals with mental and physical disabilities have historically been denied life-saving organ transplants based on assumptions that their lives are less worthy,” or unfounded claims that disabled people cannot themselves maintain or have support systems maintain post transplant care regimens.
While our main focus is stopping assisted suicide laws, we have long fought for equal protection for disabled people when it comes to being improperly identified as a potential donor or denied eligibility as a transplant recipient.
For example, the national Organ Procurement and Transplantation Network’s proposed a plan to approach as possible donors newly spinal cord injured people receiving ventilation. The network wanted go to encourage people to decline the treatment and instead donate organs as part of a heroic suicide. We helped organize to stop the plan.
In 2012, we supported the Philadelphia toddler Amelia “Mia” Rivera’s right to receive equal consideration as a transplant recipient. Mia has the developmental disability Wolf-Hirschhorn syndrome. Her parents were initially told that she could not receive a new kidney because of her quote unquote “mental retardation.”
We support the Autistic Self Advocacy Network’s leadership on this issue. The group has identified equally troubling cases of discrimination against other potential organ recipients.
Please pass this bill out of committee, it would provide necessary reassurance to people with disabilities who may need an organ transplant, and it could save lives that are just as worthy and valuable as every other life in Massachusetts.
Thank you very much.