Andrew Parsons is a 31 years old aspiring documentary filmmaker. He is a Deaf member of the chronic illness/ disabled community. Andrew is very active on Twitter where he’s supportive of other disabled community members. He previously worked as a self employed computer programmer. He says he “was part of the "digital nomads" wave during the 2008 Recession. Back when it was about low-income and financially-broke individuals trying to establish a niche in a broken economy.”
What illness(es) have you been diagnosed with?
[I became Deaf] from experimental drugs in the 80s for preventing hemorrhaging caused by oxygen-rich incubators. [I was in an incubator because I was] born premature. [I have] ruptured retinas from the incubator and cerebral palsy caused by hemorrhage inflicted [by] the same incubator.
What is your earliest memory of having your illness and being Deaf?
[I] don’t remember. I was literally three days old.
When were you diagnosed? What was your diagnosis journey like?
[I was] misdiagnosed with autism at several months old before nurses put glasses on me. The misdiagnosis carried until I was several years old when a teacher put hearing aids on me. By that time, I was fluent in ASL because of the autism misdiagnosis.
How is your diagnosis unique?
Most Deaf folks became Deaf because of measles, meningitis, rubella or comorbid disabilities like Ushers Syndrome, cerebral palsy et cetera. I don't know anyone in the culture who became Deaf because of the experimental drugs. [My] blindness,[is] caused by combination of ocular albinism, nystagmus, blonde fundus and retinal hemorrhage.
How did your being Deaf affect you in school?
Accessing education in sign language was difficult in Alberta due to conservatives co-opting disability activist language used for shutting down institutions to mask austerity measures such as mainstreaming disabled students to save money and sign language schools got shut down under the flag of "least restrictive environment" and "inclusive education". They are not bad slogans and the actions of activists are well intended, but right-wing governments have a tendency of stealing progressive or leftist [slogans or ideas] to stay relevant.
Did you go to school with other Deaf students?
In primary school, we went to Deaf socials, Deaf schools and there [were] sign language classrooms. But then my stepfather took a job up North and lied about how remote the city was before we moved up there.
There were five other [Deaf] students in middle school and high school. I wasn't allowed to interact with them because the hearing Teacher of the Deaf in the district didn't want me to contaminate Signed Exact English, Cued Speech or oralist programs with American Sign Language.
So how did you thrive in school?
I mostly survived by pretending to know Signed Exact English (which is close to Pidgin Signed English, a contact language between ASL and English) and reading lots of books to fake comprehension of Cued Speech. During high school, the principal forbid the hearing ToD [teacher of Deaf students] from interfering with my IEP [Individualized Education Program]. I was provided with note takers until they were able to find an age-appropriate ASL interpreter during the last two years.
How has being DeafBlind affected you in work environments?
[Working from home] fits well with being blind and not having access to a car. But nowadays location-independent employment has been usurped by affluents and social media "influencers" who want to be on vacation 365/24/7. Back then, there wasn't much of an exotic appeal to travel to Bali [for example] like there is today. Most stayed in their home countries. But nowadays rents everywhere have been driven up really high because of the new generation.
What were some of the prejudices you experienced?
With work, the main hurdle is getting past the "can you use the phone" and "do you have a car" even though the criteria are not applied to abled people. But I feel like asking about the phone is a way of screening out applicants because none of my peers use a phone in the workplace. They are more likely to use [applications like] Trello, Slack, frame.io, Dropbox, emails, text messaging and or video conferencing. But none of the above affected my field. Just feels like I was forced to become a programmer in 2000s because of gatekeeping in other industries. Kids are lucky the barriers to entry in 2010s are lower.
What are some other technology/ programs/ applications you use?
I always just used SMS or emails during the Nokia brick days. These days, [I use applications like] Glide, Marco Polo or WhatsApp. In recent years we have VRS [Video Relay Services] in Canada. There used to be a time when Canadians illegally used American VRS, but then service providers got caught for fraud by the FCC.
What illness(es) have you been diagnosed with?
[I became Deaf] from experimental drugs in the 80s for preventing hemorrhaging caused by oxygen-rich incubators. [I was in an incubator because I was] born premature. [I have] ruptured retinas from the incubator and cerebral palsy caused by hemorrhage inflicted [by] the same incubator.
What is your earliest memory of having your illness and being Deaf?
[I] don’t remember. I was literally three days old.
When were you diagnosed? What was your diagnosis journey like?
[I was] misdiagnosed with autism at several months old before nurses put glasses on me. The misdiagnosis carried until I was several years old when a teacher put hearing aids on me. By that time, I was fluent in ASL because of the autism misdiagnosis.
How is your diagnosis unique?
Most Deaf folks became Deaf because of measles, meningitis, rubella or comorbid disabilities like Ushers Syndrome, cerebral palsy et cetera. I don't know anyone in the culture who became Deaf because of the experimental drugs. [My] blindness,[is] caused by combination of ocular albinism, nystagmus, blonde fundus and retinal hemorrhage.
How did your being Deaf affect you in school?
Accessing education in sign language was difficult in Alberta due to conservatives co-opting disability activist language used for shutting down institutions to mask austerity measures such as mainstreaming disabled students to save money and sign language schools got shut down under the flag of "least restrictive environment" and "inclusive education". They are not bad slogans and the actions of activists are well intended, but right-wing governments have a tendency of stealing progressive or leftist [slogans or ideas] to stay relevant.
Did you go to school with other Deaf students?
In primary school, we went to Deaf socials, Deaf schools and there [were] sign language classrooms. But then my stepfather took a job up North and lied about how remote the city was before we moved up there.
There were five other [Deaf] students in middle school and high school. I wasn't allowed to interact with them because the hearing Teacher of the Deaf in the district didn't want me to contaminate Signed Exact English, Cued Speech or oralist programs with American Sign Language.
So how did you thrive in school?
I mostly survived by pretending to know Signed Exact English (which is close to Pidgin Signed English, a contact language between ASL and English) and reading lots of books to fake comprehension of Cued Speech. During high school, the principal forbid the hearing ToD [teacher of Deaf students] from interfering with my IEP [Individualized Education Program]. I was provided with note takers until they were able to find an age-appropriate ASL interpreter during the last two years.
How has being DeafBlind affected you in work environments?
[Working from home] fits well with being blind and not having access to a car. But nowadays location-independent employment has been usurped by affluents and social media "influencers" who want to be on vacation 365/24/7. Back then, there wasn't much of an exotic appeal to travel to Bali [for example] like there is today. Most stayed in their home countries. But nowadays rents everywhere have been driven up really high because of the new generation.
What were some of the prejudices you experienced?
With work, the main hurdle is getting past the "can you use the phone" and "do you have a car" even though the criteria are not applied to abled people. But I feel like asking about the phone is a way of screening out applicants because none of my peers use a phone in the workplace. They are more likely to use [applications like] Trello, Slack, frame.io, Dropbox, emails, text messaging and or video conferencing. But none of the above affected my field. Just feels like I was forced to become a programmer in 2000s because of gatekeeping in other industries. Kids are lucky the barriers to entry in 2010s are lower.
What are some other technology/ programs/ applications you use?
I always just used SMS or emails during the Nokia brick days. These days, [I use applications like] Glide, Marco Polo or WhatsApp. In recent years we have VRS [Video Relay Services] in Canada. There used to be a time when Canadians illegally used American VRS, but then service providers got caught for fraud by the FCC.
How has being Deaf affected your relationships?
My family stopped learning sign language when I was seven because my stepfather was only home once a month. He held a [fly in fly out*] job.[*fly in and out of rural areas to work] Eventually he became angry and had me sit on my hands until I learned how to speak English. My hearing mother like to use dyslexia as an excuse [not to put more effort into learning sign language], even though all of my Deaf dyslexic friends became fluent out of necessity. I think she was using her neurodiversity to shield herself from my father’s abusive behaviours. But it has been three years since they split, and not much progress with language acquisition.
How has being Deaf affected your activities you do for fun?
[I] Can't answer because I don't know any other life. Always have been DeafBlind. [The] Only thing that annoy[s] me is after living in Finland for four years, I [didn’t] have to ask for accessibility and there's always a movie available with Swedish AND Finnish subtitles at any given hour…dual subtitles with Finnish in first row and Swedish in the second row. [People in Finland don’t] have to worry about broken equipment or bad implementation of technology because the standards were already established decades ago. And… 90% of the population accepted [open captions as] the norm, we didn't have to look up special hours like most open captions theatres in United States and Canada. This [made] it easier for friends to translate sentences I didn't understand due to lack of Swedish/Finnish fluency because they don't have to listen and speak at the same time.
Movies are not open captioned in Canada. Canadian public transits are sparse or unreliable; North American city’s [urban] sprawl [is] designed for commuters and not pedestrians. Essential services in Canada like grocery, hospitals and pharmacy require car ownership to access. Canadian sidewalks are narrow or non-existent. I accepted these realities as facts of life until moving abroad, and now I am annoyed how American cities are designed for forcing people to buy cars and detached houses.
Do you want to be able to hear?
No, I don't want a cure. I just wish infrastructure and services are designed for the public. I would recommend looking up "Deaf Spaces" on YouTube. Vox did a cover on the subject. And I think there was a documentary, The Human Scale by Andreas Dalsgaard, it was about consulting with people about accessible urban design instead of assuming what the future might be like based on the next consumerist trend.
What would make life easier for you?
I guess better laws are making the world a better place. Many laws don't fully incorporate social model of disability. I just know from the history of Canada, Conservative and Liberals are invested in maintaining the status quo. We only got universal healthcare because Liberals couldn't hold a majority government without allying with the NDP[New Democratic Party]. And the same happened after WW1 when Conservative’s government needed to accommodate all the disabled veterans otherwise they were risking a destabilized country. So, it feels like progress only happens if government feels threatened by not having iron fist control over parliament. With Trudeau, some of the promises he made feel like desperate attempts at preventing Harper being elected with less then 37% of votes. Not out of goodwill or what is the right thing to do.
What things you do you look forward to?
Passion projects. I am working on figuring out same-language subtitles for American Sign Language (ASLwrite) the camera is not confined to the frame of the person and code switching to English wouldn't be awkward during B-rolls where a person speaking an aural language might be narrating.
My family stopped learning sign language when I was seven because my stepfather was only home once a month. He held a [fly in fly out*] job.[*fly in and out of rural areas to work] Eventually he became angry and had me sit on my hands until I learned how to speak English. My hearing mother like to use dyslexia as an excuse [not to put more effort into learning sign language], even though all of my Deaf dyslexic friends became fluent out of necessity. I think she was using her neurodiversity to shield herself from my father’s abusive behaviours. But it has been three years since they split, and not much progress with language acquisition.
How has being Deaf affected your activities you do for fun?
[I] Can't answer because I don't know any other life. Always have been DeafBlind. [The] Only thing that annoy[s] me is after living in Finland for four years, I [didn’t] have to ask for accessibility and there's always a movie available with Swedish AND Finnish subtitles at any given hour…dual subtitles with Finnish in first row and Swedish in the second row. [People in Finland don’t] have to worry about broken equipment or bad implementation of technology because the standards were already established decades ago. And… 90% of the population accepted [open captions as] the norm, we didn't have to look up special hours like most open captions theatres in United States and Canada. This [made] it easier for friends to translate sentences I didn't understand due to lack of Swedish/Finnish fluency because they don't have to listen and speak at the same time.
Movies are not open captioned in Canada. Canadian public transits are sparse or unreliable; North American city’s [urban] sprawl [is] designed for commuters and not pedestrians. Essential services in Canada like grocery, hospitals and pharmacy require car ownership to access. Canadian sidewalks are narrow or non-existent. I accepted these realities as facts of life until moving abroad, and now I am annoyed how American cities are designed for forcing people to buy cars and detached houses.
Do you want to be able to hear?
No, I don't want a cure. I just wish infrastructure and services are designed for the public. I would recommend looking up "Deaf Spaces" on YouTube. Vox did a cover on the subject. And I think there was a documentary, The Human Scale by Andreas Dalsgaard, it was about consulting with people about accessible urban design instead of assuming what the future might be like based on the next consumerist trend.
What would make life easier for you?
I guess better laws are making the world a better place. Many laws don't fully incorporate social model of disability. I just know from the history of Canada, Conservative and Liberals are invested in maintaining the status quo. We only got universal healthcare because Liberals couldn't hold a majority government without allying with the NDP[New Democratic Party]. And the same happened after WW1 when Conservative’s government needed to accommodate all the disabled veterans otherwise they were risking a destabilized country. So, it feels like progress only happens if government feels threatened by not having iron fist control over parliament. With Trudeau, some of the promises he made feel like desperate attempts at preventing Harper being elected with less then 37% of votes. Not out of goodwill or what is the right thing to do.
What things you do you look forward to?
Passion projects. I am working on figuring out same-language subtitles for American Sign Language (ASLwrite) the camera is not confined to the frame of the person and code switching to English wouldn't be awkward during B-rolls where a person speaking an aural language might be narrating.
