Monthly Archives: May 2023

Accessibility + Dis/ability

When the Door Opens for Everyone but You

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Imagine a new friend invites you to a party at their house. When you arrive, you knock on the door, but nobody answers. You try the door but it won’t open. You step over to the sidewalk to check that you have the address correct. From the sidewalk, you notice other people arriving and having no trouble getting in, but when you return to the door, it won’t budge for you. You text your friend, but they are probably busy greeting guests and don’t respond to your message. Finally, you decide to ask the next person arriving to hold the door open for you but when you do, they say, “Well aren’t you high maintenance?” They were probably joking, you tell yourself, but before you can respond, the door has swung shut again. By this time, you feel very dejected, not to mention worn out from pulling and pushing on the door. You are now in no mood to socialize. You go home, wondering what just happened.

The next day your friend texts you, apologizing for not seeing your message the night before. You are still too confused and exhausted from the experience to have a conversation about it, but the next time you see your friend, you explain that you tried to get in but couldn’t open the door. They look at you with confusion. “Nobody else had any trouble,” they say. “Why didn’t you ask for help?” You want to explain that you did, but you’re already feeling a bit foolish, so you just let it go.

You might laugh off this odd occurrence if it happened only once. Now imagine that this happens every day, everywhere you go: at work, at the grocery store, at restaurants, at school, at church, at the homes of every friend and family member. Nobody else seems to have trouble getting in. It’s just you.

This is what it’s like for a disabled person trying to access spaces that are designed with only non-disabled people in mind. You can take this basic metaphor and extend it in different ways to understand the experience of a disabled person. For example, as a vision-impaired person, I can usually get into a space but then I often can’t access what’s happening in the space because the signs, slides, handouts, etc. aren’t visible to me. A neurodivergent person may, like me, be able to physically enter the space, but then may find the social cues others notice to be invisible to them.

It’s frustrating and confusing. When I first can’t see what others see, I often don’t even know they see something I don’t. I sometimes wonder how everyone else knows where to go for a meeting—it often turns out there are signs that I don’t see. Asking for help is often unproductive because I don’t know what I’m missing so I don’t know what to ask for. Or, like the person who asks for help getting into the party and is met with a sarcastic response, my requests for help are greeted with snide comments because my disability isn’t apparent. (I am so tired of people pointing at signs I can’t read when I ask for help!)

As my hypothetical scenario shows, there’s no malice on the part of the friend who throws the party or even the people who don’t help. They are just oblivious to the plight of the person who can’t get in. But the lack of malice doesn’t make the situation easier for the person who can’t get in.

Last week I spent a few days in Washington, DC, doing research related to disability at several national sites. I saw lots of gestures toward accessibility that I appreciated—and yet, the doors still don’t open easily for everyone.

The National Mall: I was surprised to learn that the FDR memorial is the only one of the 100+ memorials and monuments on the National Mall to include Braille on some of its exhibits. All of the memorials and monuments have brochures in Braille available and are wheelchair accessible. A park ranger explained that the FDR memorial includes Braille as a nod to FDR being disabled himself. (I was surprised at how powerful it was to see the statues depicting FDR using his wheelchair—I’ve seen wheelchairs in photos, but I don’t think I’ve ever seen one in a statue.)

As much as I appreciated the availability of Braille brochures at the sites, every time a disabled person has to ask for accommodations, they are the person trying to get into the party at the house where the door seems to open for everyone but them. That feeling of not being able to get into the house where the party is compounds over time. Asking for a brochure isn’t a big deal. Having to ask for a brochure constantly, day after day, wears a person out. Annika Konrad calls this being worn out feeling access fatigue.

Gallaudet University: Another day I went to Gallaudet University’s National Deaf Life Museum. The museum itself was very thought-provoking, especially the exhibit on HIV/AIDS and the Deaf community. The title of the exhibit was “Left Behind” and it focused on how Deaf people didn’t have access to information about HIV/AIDS during the epidemic.

The museum is in a beautiful campus building that exhibits the traditional academic architecture Jay Dolmage talks about in Academic Ableism. From the front, it appears the only way in is up a foreboding set of stone steps. I walked around the building looking for a wheelchair accessible entrance out of curiosity and did find one, but there was no indication at the front of the building where to find the accessible entrance. A person using a wheelchair would likely need to ask a random passerby for help finding it.

I want a world in which the doors open for everyone, but I wonder if it’s even possible. Surely it would be possible to put an attractive and high contrast sign in front of a building indicating where the accessible entrance is—or better yet, make the main entrance accessible. Design Braille into the next monument. Find ways to prop the doors open.

grieving

Mother’s Day and Toxic Positivity

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For a lot of folks, Mother’s Day is bittersweet or even just bitter. Anyone who has lost their own mother or a child may find the day upsetting, but plenty of other women—particularly those who have chosen not to be mothers and are bombarded with the social expectation that all women should want to have children and women who are experiencing fertility challenges—may find the day to not be so happy at all.

I have hated Mother’s Day ever since my own mother died when I was 12. For most of my life, I ignored Mother’s Day as much as possible. Seeing the Mother’s Day card displays in stores and being asked by random strangers what I was doing to celebrate my mother activated my fight-or-flight reflex, so I learned to avoid malls and the part of the grocery store that carried cards for most of spring. It was harder to avoid those random strangers.

My late husband was a big believer in honoring mothers on Mother’s Day. He couldn’t remember a birthday to save his life, but he always knew when Mother’s Day was. He agreed with me that Valentine’s Day was bullshit and he thought Father’s Day was pretty lame, but he could never get behind the idea that life would be better without Mother’s Day.

He insisted on celebrating it. He understood and respected that I hated the day, so he mostly kept his celebrating low key, but he always made me an elaborate breakfast that day or took me out for brunch, and when possible, invited his own mother, too. The only time he ever gave me flowers was on Mother’s Day.

Mother’s Day is fraught for his mother, too. One of her sons died in his early 20s on Mother’s Day, forever tinging the day with loss. When my husband died, that made two sons she had lost.

This year, she and I observed the day together by sitting on the bench commemorating my husband/her son. We laughed and cried. We remembered some of my husband’s antics and she talked about her older son who died. It wasn’t the kind of Mother’s Day celebration ever featured in brunch advertisements or Hallmark cards, but it was much more meaningful to both of us than a fancy meal.

Crying on the bench with my mother-in-law was a highlight of my day. People may hear about what we did and think, “How sad! Someone should have taken them to brunch!” But if we’d wanted to go to brunch, we could have taken ourselves. What we wanted to do was sit on that bench and miss my husband and his brother.

What my husband liked about the day was the honoring of mothers, which I respect. What I hate about Mother’s Day is the admonishment to make it “happy,” and the accompanying implication that happiness and value for women are somehow reliant on being a mother. The day is filled with toxic positivity: the urge to brush aside grief and loss and complicated maternal relationships and just be happy!!!

What if we recast Mother’s Day to be more like Veterans Day? Nobody says, “Happy Veterans Day!” There’s no implication on Veterans Day that veterans are better humans than those of us who have not served in the military. There’s no ridiculous pressure to make a brunch reservation that day.

If anyone wants to start the petition to make Mother’s Day more like Veterans Day, I’ll sign it. Until then, I am issuing myself a personal challenge to not use the word “happy” in relation to Mother’s Day.

It’s hard. I was appalled to find myself on Sunday saying “happy Mother’s Day!” to strangers. Some weird muscle memory seems to take over on the day and I find myself singing out the words before I even realize I’m doing it. I became the random stranger I spent so many years trying to avoid. But in the year before the next Mother’s Day, I am going to practice saying these phrases until they feel as natural as “happy Mother’s Day”:

  • Wishing you love on this day.
  • How is your day going?
  • What do you need this Mother’s Day?
grieving

Self care doesn’t always look the way we expect it to

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I started working on a memoir with my husband after he had his stroke, and when he died, I continued working on it. Before he died, we thought the memoir would be about our surprisingly wonderful post-stroke life. When he died, I knew I still wanted to write the memoir, and for the first few months after he died, writing about our life together felt like a refuge and I spent many hours on it.

But at some point, I found writing about the year before his death too painful and I began writing more about widowhood. I wanted to return to and finish the memoir but I wanted to wait until I could do it without feeling like my heart was being ripped out.

As of last month, I still didn’t feel like I could go back to it without it being horribly painful. I finally decided to just embrace the suck of feeling like my heart is being ripped out. Last week I holed up in a hotel for two days to devote myself to working on the memoir about the last year of Tom’s life. I had to give myself permission to be useless in every other aspect of my life. It was gut-wrenching, but in a glorious way. The life we had was so delicious. Looking through my 86 single spaced pages of notes reminded me of so many details I had forgotten—a fall Tom had, some arguments, funny moments with the dogs, and so many root beer floats. How could I have forgotten about the root beer floats?

Having the two days to just wallow in my grief and savor it was such a luxury. I didn’t have to take care of the dogs or do laundry or wash dishes. All I did was write, cry, sleep, and eat. The pain was nearly unbearable, but I knew it would only last for two days and then I would have the distractions of dogs and laundry again.

Choosing to be miserable for two days may sound like strange self-care, but I stand by it. In fact, several lessons about self-care emerged for me during the two days:

  1. Don’t judge myself for still feeling such intense pain. The pain of my husband’s death still feels fresh and raw sometimes. I don’t beat myself up for feeling it still. I don’t tell myself I shouldn’t feel this way anymore.
  2. Give my grief a raincheck. At the same time, I don’t allow its full expression just anytime anymore. I wouldn’t be able to work and maintain relationships without some parameters around my grief this far out. One of the ways I take care of myself is by designating times to allow that pain and times to not. The two day retreat last week was time to allow it. When it’s not a designated time, I remind myself that there is a time for that pain but now is not that time.

This is a modification of a conflict strategy I learned a few years ago at a workshop at the amazing Conflict Center: the raincheck. In conflict, the raincheck strategy means committing to talking about the issue at a specific time in the future. With my grieving, it means scheduling a time to let my grief express itself, whether its during my next session with my therapist or during my two-day writing retreat or some other time. The key is to schedule it, not just put it off.

3. When the scheduled time comes, it will be easier to tolerate the pain because you know it will pass. Once the therapy session or writing retreat or whatever is over, you get a break from it. And then you can decide when you’re going to go back to it by making another appointment. I admit that sometimes my grief is so overwhelming it feels like my body is going into shock—my hands start to tingle and I can’t see straight. But it passes. It always passes. That feeling is always temporary.

4. Forgive my imperfections. In going through my memoir notes last week, I was able to feel so much compassion for my past self. There are things I couldn’t forgive myself for while he was alive—not being more patient with him when he was in pain, asking him to repeat himself because he slurred his words when he was tired, not following up as doggedly as I wish on some medical issues—but after suffering through his death I feel so much more compassion for myself. I wasn’t perfect for him but I didn’t have to be. I did the best I could in the moment. I gave everything I had, which many days wasn’t much and I wished I had more, but I still gave him everything I had on those days.

Right after my husband died, I read Bearing the Unbearable by Joanne Cacciatore. I love this quote from it:

 “I am here,” grief says. “Be careful with me. Stop. Pause. Stay with me.” (43)

I think the first three lessons I’ve listed here are ways of staying with grief, but making it bearable. And the fourth lesson is about being gentle with myself, and who doesn’t need more gentleness in their life?

grieving

When Your Grieving Friend Doesn’t Reach Out, It’s Not Because They Want to Be Alone

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I’ve been reading a book by the U.S. Surgeon General, Vivek Murthy, called Together: The Healing Power of Human Connection in a Sometimes Lonely World. Murthy sees connection as vital to human life, impacting many aspects of health and wellness and he believes its absence leads to poor physical and mental health.

I’ve written many times about my experiences reaching out to others as I grieve my late husband’s death (see this, this, and this ). Murthy gives me some other ways to understand my experience.

Murthy explains that evolutionarily, if an early human got separated from their group, their likelihood of survival was slim. Early humans depended on the group for security and safety as well as gathering food. A human on their own needed to be on high alert 24 hours a day. That’s why being alone can trigger a stress response. Our brains think we are in danger even if our physical needs are being met because early in human history, being separated from the group was a physical threat to survival. In this way, extreme loneliness can feel like anxiety.

Murthy helped me understand a phenomenon I hear about regularly in the widow support groups I belong to. Many widowed people say that after an initial outpouring of support, everyone disappears and they are left completely alone. I think this happens for a number of reasons: people don’t know how to offer help effectively (read my pointers on this!), they don’t realize that grief never ends and that grievers need continued support, or their attention is diverted to another situation.

I’ve been that person in every one of these situations. Before my husband died, I offered help by saying “let me know how I can help” and assuming if I didn’t hear anything, the person was doing fine. I thought grief lasted from a few weeks to a few months, depending on the loss, but it didn’t occur to me that it went on indefinitely—even though I lost my own mother when I was 12, I didn’t realize how long grief lasts. I thought there was something wrong with me for feeling grief over her loss years after her death.

More recently, I’ve been the person whose attention is diverted to something else. A good friend lost both her parents within a few months and although I meant to be more of a presence in her life in the aftermath, I’ve had my own problems to deal with.

So it’s definitely not personal when the help fades away. And this is why I think that when we are in need, we need to let others know we are in need. But it’s hard. And here’s where Murthy helped me better understand what’s going on when someone won’t reach out for help. Besides it being just difficult to be vulnerable, as I’ve talked about before, the way humans have evolved has made the effects of loneliness negatively impact our abilities to reach out.

Murthy discusses how loneliness makes us less likely to trust others. He calls this the paradox of loneliness: “When we become chronically lonely,” he explains, “our threat perception changes . . . so we push people away and we see risk and threat in benign social opportunities.” So when we are most lonely, we are also most likely to avoid others and feel alienated.

I’ve definitely felt this. The more alone I am, the more being alone feels like the only safe and comfortable option. I think of it like muscle memory—the ways I automatically respond to other people when I am not lonely stop being automatic when I am lonely and require concerted effort. That effort makes it feel like too much work sometimes or even dangerous.

I’ve seen other widowed and grieving people pull away from others and then feel like they were abandoned even though they themselves pulled away. I now can understand that as the loneliness paradox Murthy describes. (If you’re curious about this phenomenon, I highly recommend chapter 2 of Murthy’s book.)

What this means is that if you know someone who is grieving and you haven’t heard from them in a while, don’t assume that’s because they don’t want to hear from you. So many people tell me they have held back on contacting me because they don’t want to be a bother, but not one single person who has reached out to me has been a bother. Not one, and I say this as an extremely introverted person who loves being alone.

People love being thought of. All you have to do is send a text that says, “Hey, I’m thinking about you. Interested in getting coffee?” You may not get an answer, and if you don’t, don’t take it personally. And then two or three months later, send another text. You may not get an answer to that one, and if you don’t, don’t take it personally. Continue this practice, never taking it personally if you don’t get an answer.

If you’ve been like me and gotten distracted from supporting a friend who is grieving, stop feeling bad and embarrassed to reach out. Just reach out. Send the text. It doesn’t matter how much time has gone by.