PS: What was the feedback you got from Stephen and his family?
ER: When we made the film, we used our approximated synthesized version of his voice, and after seeing the film, he gave us his voice. I know that sounds odd, but he has the copyright for the specifics of his voice. For me that was the most heartwarming thing. He said some very generous things, and he said at one point he was watching it and didn't know if it was him or not. And I was like, "Stephen, I will take that as the greatest review of my life!"
PS: There are some funny parts in the film where you think, "Is it OK to laugh?" Obviously he has a great sense of humor and is a charmer, and it was awesome to see how you made light of some situations while still staying true to this horrible disease.
ER: That's something that I found so empowering when I first met Stephen. His humor is properly funny and he is sharp as a knife; nothing passes him. At the same time, one of the motor neuron patients I met in the process had told me that he had almost died in a choking fit with something he had eaten the day before. He was there with his wife, and she described how he had come down the next morning and was like "I wonder what death-defying act I can do today!" Similarly, Tim Hawking, Steve and Jane's youngest son, told me that as a kid he would use his dad's wheelchair as a go-kart, he would put swear words into the voice machine, and all of those things. Up until that point, I had been very sort of . . . you know, you don't want to be anything but respectful to the illness, but you realize that people are people and find humor in complicated situations. That was really important for me to try and find. So yes, you are meant to laugh, because Stephen is hilarious.
