Tag: Disability

Books Finished so far in 2023

Posted on by Jen

Below are the books I’ve read so far in 2023, not necessarily in order within the month of completion.

Books Finished in January

Nophek Gloss The Graven #1, by Essa Hansen
I liked the characters though the plot was a bit confusing and sometimes frustrating, but I still enjoyed it. I will need to check out the next book.
Black Sun – Between Earth and Sky #1, by Rebecca Roanhorse
This was a really interesting book. I enjoyed the different points of view characters their stories as things progressed. I am looking forward to reading the next book in the series.
Everyone’s a Aliebn When Ur a Aliebn Too by Jonny Sun as Jomny Sun
A surprise graphic novel! It was a fun read.
Africa Risen: A New Era of Speculative Fiction, edited by Sheree Renée Thomas, Zelda Knight, Oghenechovwe Donald Ekpeki
Love After the End: An Anthology of Two-Spiritand Indigiqueer Speculative Fiction, edited by Joshua Whitehead
This applies to the above two because I’m saying the same about both. I really enjoyed the stories in both anthologies. They each have a lot of interesting characters and stories about the characters. As with any anthology I read I look forward to looking up the various authors and seeing what else they have written.

Books Finished in February

Not a Nation of Immigrants: Settler Colonialism, White Supremacy, and a History of Erasure and Exclusion by Roxanne Dunbar-Ortiz
This was an interesting read – some history I already new about and some I did not. There was a lot of stuff I would say is important for us to know.
The Vanished Birdsz by Simon Jimenez
The way this story unfolded took some getting used to but I really ended up enjoying it. There’s a lot going on and a single paragraph can span several years which makes things even more interesting. The characters make it all wroth it.

Books Finished in March so far

Some Kids Left Behind: A Survivor’s Fight for Health Care in the Wake of 9/11 by Lila Nordstrom
I really enjoyed reading this and I feel like I learned a lot about the aftermath of 9/11 from the point of view of people like Lila – people who lived near the towers. There’s a lot I had never heard about or realized. Also a lot comparisons to be made about what is going on now with COVID

COVID Precautions

Posted on by Jen

Note: Originally posted on https://jenrohrigdesign.com/

Shortly after posting the previous post (Three Years of COVID) on the night of December 31st I developed a fever and increased congestion. The very mild congestion had been there but felt normal for this time of year. After sleeping badly that night I took a COVID test early the next morning. It was positive almost right away – apparently that signals a high viral load. Fortunately I was able to get in touch with a doctor through my insurance’s virtual Doctor portal and obtained a prescription for Paxlovid which I started that night.

I stopped eating at restaurants early in 2020 when the pandemic started and started wearing masks when going to the store and other places I needed to go that were indoors. I’ve continued to do so, including wearing a mask at work when we returned fully to the office. As I said in the previous post it’s been frustrating watching everyone go back to normal and acting like the pandemic is over. COVID is still here and in Massachusetts the cases are increasing. The fact that I got it now after all this time is only proof that everyone should have been taking it seriously.

Some people would say that since I got COVID anyway, taking precautions is pointless. I think they’re either ignoring or misunderstanding that the precautions available – vaccines and wearing a mask and social distancing – were always about reducing the risk of getting COVID. Nothing is 100% – including COVID precautions. Just like wearing a seat belt and having an airbag in a car isn’t a guarantee you’ll survive a serious car accident, but they do improve your chances of getting out of it alive. It’s also true that the vaccines and boosters help reduce the severity of COVID if you do get it.

What truly bothers me about getting COVID now is if I hadn’t been paying attention I would have missed the fact that I was developing a fever the evening December 31st. Because of how mild my symptoms were, if I hadn’t realized I had a fever, I may not have tested myself for COVID. It also happened that I still had a few home tests left at home otherwise I would have had to wait for a PCR test. Given all of this it’s really not a surprise COVID is out of control, and that’s why I believe we should be continuing all of the precautions.

The argument that COVID is not any worse than the flu has always been wrong – especially since this is a new virus that we don’t know enough about even three years later. There’s increasing evidence that evan mild cases (like mine) can result in damage to the body and Long COVID symptoms. Also it was never actually a good idea to repeatedly get sick to start with. People may think it’s “normal” to get colds every year but avoiding getting sick has never been a bad idea. Staying home when sick has always been the best idea – the problem is that many schools and workplaces don’t allow for adequate sick time. As a result we’ve developed this mindset that getting sick is just the way things are because it can’t be helped.

There’s also a lot of misinformation going around about “immunity debt” and people insisting that we need to get sick in order to have a healthy immune system. The article “There’s no such thing as a good cold: “Immunity debt” can explain this year’s eye-popping cold and flu season — but it can also be dangerously misinterpreted.” does a good job of explaining how it isn’t safer to get sick than it is to avoid getting sick if you can.

I continue to believe that mask and vaccine mandates are needed to slow if not stop the spread of COVID. That said I also believe there have been situations where mandates have caused more harm than good because of how they’ve been implemented. For example disabled people living in group homes, or anyone living in congregate settings, who already had limited access suddenly having access to nothing. No contact with family, no access to medical teams or other therapies, no ability to even go outside because the staff wouldn’t take them. In many ways their safety was more impacted by the lock downs than COVID even while being at higher risks of dying from it.

There also continues to be a disproportionate response to violations of various rules regarding masking and social distances. There were several news articles about the numbers of Black people being arrested (sometimes violently) for not social distancing or wearing a mask compared to white people doing the same thing being ignored. There’s also been an increase in violence towards Asian people – blaming them for causing COVID. I strongly recommend reading Steven W. Thrasher’s book “The Viral Underclass: The Human Toll When Inequality and Disease Collide” for more on the disproportionate responses to how society deals with managing disease.

Additional Reading:

“The terrible toll of COVID-19 on people with intellectual disabilities” by Wendy Ross, MD at AAMC

“COVID continues to hit nursing homes harder, AARP data shows: Cases are surging everywhere, and nursing home residents remain more likely to face severe illness and death.” by Sara Luterman at The 19th

“The People Who Can’t Just Wear a Mask: The new CDC guidance provides hope for some of the people most isolated by the pandemic.” by Sara Luterman at Slate

“High-Risk Pandemic Stories: A Syllabus” a collection of various articles, blog posts and tweets created by Alice Wong at the Disability Visibility project: “Since March 2020 I have been collecting strands of disabled wisdom about the pandemic and trying to gather, weave, and share them. Disabled, fat, older, poor, immunocompromised, and chronically ill folks have been oracles well before this global public health disaster and continue to this day as institutions and leaders treat marginalized communities as disposable.”

“Long COVID: Long-Term Effects of COVID-19” by multiple authors at Hopkins Medicine

“Long COVID stemmed from mild cases of COVID-19 in most people, according to a new multicountry study” by Sara Wulf Hanson and Theo Vos at The Conversation

“Even mild Covid is linked to brain damage, scans show:
The new British research is the first to reveal striking differences in areas of the brain based on scans taken before and after a coronavirus infection.” by Benjamin Ryan at NBC

Three Years of COVID

Posted on by Jen

Note: Originally posted on https://jenrohrigdesign.com/

I’m so frustrated that we’ve had three years of a pandemic that very few people have taken as seriously as they should. It’s been frustrating watching everyone drop all precautions and acting as though there’s no reason to continue being cautious. The news paper articles and other media mocking those taking precautions have been happening for a while but they’re getting particularly worse as those of us who are still taking precautions are largely viewed as fearful of everything.

The pandemic isn’t over despite what a lot of people want to believe. We never had COVID under control and most people never took it as seriously as they should have. Part of the reason for that is that the groups most impacted were minorities (Black and Indigenous people, disabled people and/or elderly people). People, including the director of the CDC kept saying only the old and already sick would die. The statement is horrible on its own but it’s also largely a lie given the numbers of deaths there have been from COVID at all age levels and health. But then some of us are used to pushing aside scary ideas and focusing on the positives…

In chapter three of their book “The Future Is Disabled” Leah Lakshmi Piepzna-Samarasinha has a section called “Death COVIDs” and Disabled Grief Access Intimacy” which begins with the following two paragraphs:

“Every single BIPOC person I know had an incredible number of people in our lives die during the pandemic. A lot of us weren’t strangers to death, we’d lost people to suicide or gun violence or cancer before. But the past two years of COVID and the triple pandemic have meant we’ve often lost more people, more quickly, than ever before. I know friends who’ve planned seven funerals since 2020, or lost four people they loved in one month.

And it’s been my experience that a lot of even my white disabled friends were uncomfortable with this kind of mass death faced by their BIPOC disabled friends. They lost people too, but it wasn’t quite at the same level. And they didn’t know how to deal with it when we did.”

Later on in the same section Leah Laksmi talks about the difference between their experiences with COVID – “death COVIDs” and other people’s (mostly white) experiences with COVID – “boring COVID”. I’m admitting my own privilege here – I’m one of the people who experienced mostly boring COVID, at least in terms of my personal life. While I know people who have gotten sick none of them have actually had a serious case or died from it. Which is probably why even at work we’re mostly back to normal. For some value of normal… we should all be thinking about what normal actually means.

Imani Barbarin of the blog Crutches and Spice has an great blog post on that subject: “You’re Never Getting “Normal” Back”

“We cannot afford normal—and it seems that only the privileged are the ones who can actually afford to return to it. To want normal says that you have identified all of the issues put on display and said, “I’m fine with that.” Unfortunately, the rest of us cannot be and never have been alright with normal. […]”

I know exactly how privileged I am in that I haven’t yet gotten sick with COVID, nor has anyone in my family died from it. At least not yet – given how the rest of my family has mostly gone “back to normal” it’s probably only a matter of time.

Edited May 2023

For various reasons I do not wish to discuss at this time I am no longer involved with Marked By COVID. As such I have removed all links to that group.

Another group I’ve been following is the COVID-19 Longhauler Advocacy Project which formed in 2020 and has become “an organization known for comprehensively advocating on behalf of the Long COVID community” – Long COVID is another thing people aren’t taking seriously enough. People don’t seem to realize that even if they’re lucky enough to survive COVID they could still end up with Long COVID symptoms. I know a handful of people who are now experiencing Long COVID – though not directly within my personal life.

I’ve also been following the People’s CDC and their reports about COVID levels as it’s become clear the official CDC can no longer be trusted to give an accurate picture of COVID. “The People’s CDC is a coalition of public health practitioners, scientists, healthcare workers, educators, advocates and people from all walks of life working to reduce the harmful impacts of COVID-19.” They’ve been posting weekly “Weather Reports” about COVID – the latest one is from December 25th.

Soon I’m going to write another post about COVID precautions that we should be taking but also about how those same precautions have disproportionately impacted various groups of people. Because both things are important to be aware of as we go forward with 2023. COVID isn’t over and how we handle it speaks to how we care about others. Meanwhile check out the additional readings and links below

Additional Readings

“‘We’ve always been surplus’: Individual tragedy and collective trauma from COVID: Survivors organize toward the first statewide memorial for COVID in the U.S.” by Austin Fisher at Source NM

“Op-ed: Move on? When it comes to COVID-19, we need an official Memorial Day” by Jennifer Ritz Sullivan at Metrowest Daily News

For the Uninsured, COVID Care has Entered a New Stage of Crisis by Noah Weiland and Sarah Kliff at Yahoo News

“Study: Covid’s racial disparities made some white people less vigilant about the virus: A researcher said that the findings show that white people tend to care less about Covid and its impact when they believe it is “not a white people problem.” by Char Adams at NBC News

Social Media Links for Mentioned Organizations and Individuals

COVID-19 Longhauler Advocacy Project on Twitter

COVID-19 Longhauler Advocacy Project on Instagram

People’s CDC on Twitter

People’s CDC on Instagram

Why Bother Making Things Accessible?

Posted on by Jen

Note: Originally posted on https://jenrohrigdesign.com/

A lot of people will ask that question because for the most part they go through their lives without needing to think about how difficult things can be. Sometimes even when they do experience some difficulty they’ll think “that’s just the way the world is” without considering if it could be better. Sometimes the only reason why things are at least somewhat accessible is because it’s the law.

A blot post from AssistiveWare asks Why isn’t the world accessible in the first place? for Global Accessibility Awareness Day.

If we believe that accessibility is important and we should be implementing it, why don’t we already consistently and thoroughly account for disability in design? Is it just a knowledge gap, or is there more at work?

In my previous post The ADA at 32 I talked about how many people don’t really have a full understanding of the limites of the American’s With Disabilities Act. They will talk about how things are “illegal now” or to simply “call the ADA” to report issues. Things can and should be made better and it’s a struggle to get people to understand why things should be improved for all of us. I also included a few links in that post about how the ADA does not go far enough.

My answer to “why bother?” is “why not?” – I mean honestly why not make things accessible to everyone? The problem is as I said above the majority don’t even see the problems that do exist. It isn’t a problem for them so they don’t bother thinking about it. As a result accessibility depends on people actually fighting for it and continuing to make noise about the various issues that exist.

Accessibility Benefits Everyone

But let’s look at it another way – accessibility isn’t just for disabled people, when done correctly it can benefit everyone.

Why Designing For Accessibility Helps Everyone written by Daniel Abrahams at Access Innovation Media:

Automatic doors can also save businesses money – they open only when needed, they cut down on energy waste which directly implies a reduction in heating costs plus no fingerprints on the doors either so no need for extra cleaning.

Getting Accessibility Right

We still need to make sure things are accessible to all those who need it. Often accessibility is denied without thought because someone believes it isn’t worth the cost or the time. Sometimes it’s about a lack of awareness of what is needed or assumptions being made about the types of accommodations that should be offered.

For example I’ve seen situations where only a sign language interpreter was offered and when captioning was requested as well it was denied because “there’s an interpreter provided” – which ignores the fact that many who are hard of hearing don’t know sign language and still need captioning. Of course there’s also the assumption that automocati captions are good enough without realizing just how bad auto captions are.

Another example is in webinars the sound quality may be bad and when it’s pointed out people are directed to the captions that exist. The problem with this is that people with cognitive issues may not be able to read the captions and are depending on good sound quality.

In both examples any attempts to point out issues are dismissed because people believe what they have done is enough.

About Competing Accessibility Needs

Competing accessibility needs do exist. Sometimes making things accessible for one group will make things inaccessible for another. Attempts to mitigate the problems should be made but it should also be acknowledged that it isn’t always possible. There are things that should be done to address the issue however.

Understanding Competing Accessibility Needs by Brooke Winters at Thinking Person’s Guide to Autism:

It may not be possible to make every single event accessible to every disabled person but there are steps we can take to make sure that every disabled person has events that are accessible to them.

Final Thoughts

Accessibility is always a work in progress and I believe we should always try to do better. We should notice when things are difficult and we should make noise about it when possible. It’s important to remember that the Americans With Disabilities Act often depends on disabled people to voice complaints about inaccessibility before anything is done. Nothing changes unless someone says something so people should say something.

About Limits

Posted on by Jen

Note: Originally posted on https://jenrohrigdesign.com/

When it comes to disabilities there are two kinds of limits:

The ones that actually exist in our bodies. And external ones that others place on us.

Because of ableism others will insist that there are things we can never do. Proving them wrong is always the goal.

Because that’s how we survive.

At the same time we need to figure out the real limits that exist and respect those. Because pushing too hard against the real limits can cause more harm than good.

It’s up to us to figure out and manage both of them. Because of ableism, it’s easy to get the two mixed up.

That’s the challenge.

I posted the above on my Instagram a while ago and I want to expand on it a bit. There’s so many examples of this out there.

There’s more than one person with Down Syndrome who has run a marathon for the first time. That’s an example of the first. People assumed that a person with Down Syndrome couldn’t possibly run a marathon, obviously some can. Just like anyone else, and it’s not really a surprise. But the problem is some of the language around it includes wording like “overcoming disability” or “despite their disability” which only adds to the problem. It’s not overcoming a disability, it’s overcoming ableist assumptions about that disability. It’s also important to remember that not everyone can run a marathon no matter who they are. Saying “if they can do it anyone can” is dangerous. It also downplays the person’s accomplishments because running a marathon is hard. They worked hard for it and they deserve to be praised for that hard work.

Knowing your own personal limits is important for your health and safety. It’s true that some people, disabled or not, will always push themselves and take risks. That’s fine for them if they know the risks but at the same time they should be asking themselves if it’s worth it. There are some things that just don’t seem worth it, like doing permanent damage yourself. And in this case I’m speaking of all kinds of people in all kinds of situations. I get that for some people playing sports is a way out of the situation they’re in but it still seems like in some cases the outcome wasn’t worth it.

I’m hard of hearing and people assume that because I wear a hearing aid my hearing is normal. What they don’t realize is that being hard of hearing means I don’t have the ability to filter out background noise like other people do. Everything is amplified with the hearing aids so in order to not be bothered by things like air conditioners running I have to turn my hearing aids down. It also means my ability to hear someone depends on where they’re standing and how close. I’m not going to hear someone behind me or facing away from me. These are real limits that actually exist for me. Ignoring those limits means I don’t hear things. If I don’t make someone turn around and face me and/or repeat things I miss out. I have to remind people that I am in fact hard of hearing.

Some might say that I should just keep my hearing aid up all the time so that I can hear everything and not make other people responsible. Well I’ve tried that and you know what happens? I get a headache and I still don’t hear everything anyone says because I’m mostly just hearing the background noise because it’s so loud. I have no choice but to advocate for myself and tell people what I need.

Dealing with both types of limits is hard – learning which ones are the fake ones placed on us and learning which ones are real will always be complicated. Sometimes the ones placed on us by others are also real ones – and sometimes what we thought were real ones turn out to be ones we were told by others years ago and didn’t realize it. Sometimes the limits are only limits until we are given the tools to figure out alternate means of doing things and everyone around us accepts those modifications. We don’t need to be like everyone else to accomplish things, we need to be allowed to accomplish things in our own way.

The ADA at 32

Posted on by Jen

Note: Originally posted on https://jenrohrigdesign.com/

The Americans with Disabilities Act (ADA) was created in to prohibit discrimination against disabled people. At least the ADA was intended to prohibit discrimination – many places are still inaccessible and discrimination still exists 32 years later. Many businesses have spent the last 32 years, and money, arguing why they shouldn’t be forced to change their buildings rather than changing them. Employers still use “not a good fit” to cover a multitude of sins. Even when employment is granted accommodations are routinely denied for a number of reasons or the person ends up fired. The general public doesn’t seem aware of the issues – instead arguing “it’s illegal!” Or “Call the ADA” without realizing the burden is on the disabled person to sue the employer or business that is violating the law.

Here’s an article that details a few examples: Advocating for ‘tough issues’: ADA enforcement often falls to people with disabilities

During the pandemic many of the accommodations that disabled people had been asking for years were granted only because everyone needed them. Some examples include being able to work from home, virtual doctor visits and other events that became virtual. As soon as everything started opening up again those accommodations were taken away. People were encouraged to return to the office, and many of the virtual options were discontinued as soon as in person events could happen again. But the fact that the accommodations were granted only shows that it is possible to have that kind of access.

The ADA has always been under threat – many lawsuits have gone through the courts, some that could have led to the ADA being gutted because certain groups felt that the ADA required too much from business and employers. Because of recent actions by the Supreme Court disability rights lawyers are increasingly hesitant to file lawsuits because they fear it will give the court a reason to gut the ADA. Read the article at MSNBC.com – “How this Supreme Court is setting back disability rights — without even trying” by Eric Garcia, MSNBC Opinion Columnist

Back in July 2020, Cal Montgomery, wrote a blog post “I Will Celebrate ADA30” in which he noted additions problems with the ADA:

“But the ADA represents a hollow promise. It was never meant for all of us. It was always intended to protect some disabled more than others, and still other disabled not at all. And the independent living movement, which plays an enormous role in cross-disability agenda setting, has focused on the kind of “one and done” accessibility that is coded into the ADA Accessibility Guidelines (ADAAG) (and even then only some people’s “one and done” needs are addressed) rather than the ongoing work of negotiating the fluctuating and complex access needs of individuals, groups, and communities.”

The ADA may have done a lot to improve the lives of disabled people in the 90s but it never went far enough and these days it seems like it could be gutted at any time because certain groups don’t believe others should have access to anything.

Be sure to also read: A Letter to the Americans with Disabilities Act on Its 32nd Birthday by Sandy Ho posted earlier this week.

The moment that photo captured, your passage, was just the beginning. As we both know by now, the first step in every struggle for civil rights is necessary but hardly enough.