More and more people are fighting to change the way government policy mandates people with disabilities live in poverty and prevents them from getting married.
When the government determines who gets access to affordable support from home health aides or residential care, funding to relocate to accessible housing or modify existing housing, prescription coverage, accessible education, and accessible public transportation, the government gets to determine whether people with access needs will be impoverished or not.
Limiting accessibility to those who are living in poverty mandates poverty for people with access needs. Basing these decisions on household income makes it effectively impossible for people with access needs to marry or even live with a partner.
I'm hoping that today’s election in Canada will bring us leadership who agrees that people with disabilities and their families deserve to have the same opportunities as everyone else.
Covid has highlighted just how many among us are “high risk.” People who had long worked to keep their health concerns quiet have now explained to friends, family, and coworkers that they have conditions that put them at a higher risk of hospitalization or death if they’re infected with covid.
So many people imagine “accessibility” is about people using wheelchairs and the elderly. The number of “high risk” people demonstrates that most of us have access needs. Adjusting our lives to accommodate them is automatic until it’s not.
When we care about other people, their access needs become our access needs. If a venue isn't accessible to my friends, I can't go there either. If an office environment causes strain for my coworkers, we're all held back. When transit doesn't meet people's needs, it slows us all down.
Let's stop leaving people behind.
I'm back in the US for the first time since the pandemic. I remember getting on a bus to Toronto on Valentines Day, wondering if I was being irresponsible crossing a border to go home when the news was starting to cover an outbreak.
I crossed the border again last week, despite rising covid rates and my expired travel documents, to attend my step-sister's wedding. You can only put things off for so long when the moms on both sides have stage four cancer.
Marriage is a legal institution and it’s a community institution. It’s never just between two people. There’s who is recognized as belonging at the family reunion. There’s who is recognized as kin by hospital staff, social workers, tax auditors, and border agents.
Life is never on hold. Not during a pandemic. Not during caregiving. Not during a busy time at work. We may view our shifted priorities as temporary, but the world doesn't wait. Friends who were pregnant the last time I saw them now have toddlers.
This is our one life. We rarely get to choose our circumstances, but we do get to choose our priorities.
People with significant access needs deserve the same ability to rank their priorities and decide what risks to take as I have.
When I make choices other people don’t understand I may worry about what people will say about me. They may not approve of how I spend my money, what I eat, how much exercise I get, who I date, or what I do with my time.
I don’t worry about someone going to court to become my legal guardian and obtaining the right to make future decisions on my behalf.
I anticipate the hassle of trying to get back to Canada with expired documents. Still, I have hundreds of pages in Google Drive to verify my status in the country, demonstrate that I submitted my permanent resident renewal packet a year ago, and have a date scheduled to take the oath of citizenship. It’s a hassle, not a catastrophe.
In applying for Canadian citizenship, I had to demonstrate that I’ve been physically present in Canada the required amount of time. I did not have to prove my worth or my need.
When someone has access needs, the government demands they prove their worth and their need over and over again. It’s not enough to be a person. They have to be among the deserving poor.
It took me two days to gather the documents required to request emergency travel documents. I had to submit five years of tax returns, bank statements, proof of where I’ve lived, a scan of every page of my US passport, copies of old IDs, etc, all of which took time to gather and organize. Then I couldn’t upload them because there was a 25 mb file limit. I agonized over what to remove, compressed the file as much as I could, and submitted it.
The submission confirmation email included a second set of instructions that contradicted what had been provided on the government website, making it clear that I had to start over. It also said repeat submissions would be ignored.
I used to manage proposals for engineering firms working for the US government. I did well because of my attention to detail and ability to navigate government websites. Yet here I was, unable to do this seemingly basic task.
I’d assumed it’d be relatively easy to get emergency travel documents. So many tourists lose their passports on vacation and still catch their flight home. How do they do it?
In order to obtain accessible housing and supports, it’s not enough to be the deserving poor, you have to be impeccably organized, tech savvy, and prepared for government agents to scrutinize your bank statements. You have to be able to figure out how to house, feed, clothe, and care for yourself while you wait for the government to be convinced that you can’t do these things for yourself.
I remember laughing bitterly over drinks with a friend who couldn’t get accomodations for her ADHD and autism. She’d lost the paperwork showing she’d been diagnosed with these conditions before she moved to the UK. She couldn’t navigate the system to fill out paperwork and show up to appointments to be re-diagnosed. The whole point was that she needed support because of her lack of executive functioning.
We know that the cost of home health aides, residential care, prescription medication, restrictive diets, adaptive clothing, home renovations, time off of work, and all the other financial costs of access needs will eventually impoverish someone. Yet so often the government requires people be impoverished before these supports are furnished. Punishing amounts of paperwork, home visits, and other qualifications are necessary to obtain and keep coverage.
There are excuses for why we subject people with access needs to this treatment. It’s to eliminate fraud. It’s to ensure they’re getting appropriate care. It’s to keep costs down. It’s because families should be taking care of their own. What people deserve is an afterthought, central only in the marketing materials.
I imagine there would be far less animosity between care recipients and family caregivers if those family caregivers weren’t responsible for someone’s survival and given such absolute power over determining what the “recipient” deserves.
Imagine what it would be like to live in a country where accomodations were simply available to be requested, not fought for.
The Brooklyn Public Library offers its services to anyone who lives in or works in Brooklyn, or pays taxes in New York State. When I moved to Brooklyn in the early 2000s, I looked over the list of required documents, yet it still took me three tries to get a library card.
In Calgary, if you show up at a library or log-in from within city limits they’ll give you a library card.
The way we treat people is a choice.
The way we treat people is a choice. Merely seven simple words, but so filled with meaning. May I add to this; "The was we treat ourselves is a choice." We are given the ability to make choices in our one go-around here and not all those choices which we make are healthy for either ourselves or others. But we still have the choice to look at ourselves and learn from our missteps. The world appears to be coming to the realization that all of us deserve support, respect and love. That seems to be easy for many of us. The difficult part is treating ourselves with the same support, respect and love.