A new short film directed by Academy Award-winning New Zealand filmmaker Taika Waititi features Dr. Tristram Ingham, a physician and disability advocate living with FSHD. The film was made in honor of International Day of Persons with Disabilities, observed on December 3rd since 1992. Watch this moving, fantastical film and read about Dr. Ingham’s experience with FSHD and the impact it has had on his voice.
The film promotes Apple’s new Personal Voice feature, which allows people at risk of speech loss to create a voice that sounds like them. Dr. Ingham says, “Disability communities are very mindful of proxy voices speaking on our behalf… Historically, providers have spoken for disabled people, family have spoken for disabled people. If technology can allow a voice to be preserved and maintained, that’s autonomy, that’s self-determination.”