I might, might, be just calmed down enough to address what GOP Rep. Steve Scalise did to Ady Barken, activist and fellow person with ALS. But only just.
If you have not seen or read about this yet, Ady Barken interviewed Vice President and Democratic nominee for President Joe Biden in a piece that was used during the Democratic National Convention. Ady, like me and thousands of others with ALS, uses an electronic speech device to communicate. During the interview, Ady asks Biden if he agrees that some public safety funding could be redirected toward mental health professionals and social workers. “Do you agree that some funding can be redirected?” is the closing question.
Scalise decided to take that question and twist it to his own Machiavellian purpose. He doctored the question, using Ady’s voice, adding “from police” at the end. Ady Barken has not advocated for defunding the police. Like me, he is far too busy advocating for a health care system that doesn’t write people off as not deserving life if they don’t have a job that pays part of the insurance bill.
But Steve Scalise decides that he can further his career by literally putting words into Ady’s mind and voice. Steve Scalise decides to USE Ady’s disability to foment fear, with the ultimate goal of keeping his job in November. This is beyond low.
Making matters worse, his campaign doesn’t think there is anything wrong with this, saying that, in effect, defunding the police is what Barken really meant. As if Ady isn’t capable of thoughts that don’t need Steve Scalise’s forked mind and tongue to interpret for us. I don’t swear, so “forked” is all you get. Scalise even defended this on his Twitter feed by saying Joe Biden does support defunding the police (he doesn’t) anyway. WHAT’S THE HARM?
Readers of my book Shells: Sustained By Grace Within The Tempest may remember how I agonized after I lost my voice, how I was so surprised by how much of what I identify as “me” centered on what my voice sounds like. Losing my voice was more devastating than no longer being able to drive, walk, or even go to the bathroom. Scalise did nothing less than use Ady’s identity for his own financial gain. Impersonation for profit. That, dear readers, is a crime. Or at least it would be, if Ady Barken weren’t disabled.
Which leads to the B side of this little post.
I struggle, often, to conduct business over the phone. Yes, I can use my tablet to make and receive calls, and I have my own personal phone number. Technology is not the problem. People and policies are the problems.
Organizations will not recognize the speech coming from my tablet as my authentic voice, and people will therefore not give me access to my own information. Doctors do not make appointments, medical supply companies won’t take my orders, and banks and insurance companies refuse to give me my own account information, regardless of how many security questions I answer correctly. Even the helpline for Social Security Disability Income refuses to take my calls.
All of these situations are discriminatory. But organizations believe someone might use an artificial voice for fraud, therefore our voices are disregarded. Like there is a lucrative black market in feeding tube supplies. Steve Forking Scalise just gave credence to that ridiculous belief, setting back our struggle for autonomy and equality untold years.
Ady, myself, and others with ALS are grown adults with fully-functioning minds. We are not children needing a responsible adult to make a cash transfer, payment, or dental appointment for us. And we certainly don’t need Steve Scalise putting words in our mouths.