Guest Post: A New Diagnosis in the Mix?

Image: Imani Barbarin. (Photo by Imani Barbarin)

Today’s guest post is by Imani Barbarin, an African American disability rights activist with cerebral palsy. She is a blogger, a scholar and a vocal presence on Twitter. Ms. Barbarin holds a degree in Creative Writing from Eastern Univerity and a minor in French from the Sorbonne.

If there is one thing that is a constant for us all, it is that nothing is constant. Especially not health. In an instant a life could irrevocably change and the people around that person will be lost as how to interact with the person before them. The prevailing wisdom when encountering a new diagnosis in a friend or loved one is to treat that person as though nothing has really changed. That’s simply inaccurate. They have changed. You can feel it in the hollow laughs and heavy silences. It’s alright to admit. So, how do you move forward together and keep your loved one in your life?

To start, you must come to the heart of the essence of your relationship and recognize that while the expression of your affection may change, the heart of it doesn’t always have to. Try to create a space to allow them to open up to you. Be mindful that they won’t always want to talk about it, but if you’re consistent in your ability to make them feel comfortable and cared for around you, that conversation will come. Don’t be forceful, just be there.

Be prepared for the frustration. Dealing with a new diagnosis means immediate changes in lifestyle that can be difficult for anyone to adjust to. Harder still is to determine how those changes might affect the things we love to do and the people around us. It’s easy to become agitated when we’re confronted with what we formerly loved and enjoyed is no longer able to fit into our lives. Wherever possible, try to examine the limits of what they’re still able to do. If their new diagnosis means sensitivity to flashes of light, forego trips to the movie in favor of trips to museums or parks. Should they now have dietary restrictions, allow them to choose the restaurant (or venue) so they can plan their food choices ahead of time. If they have ambulatory issues, consider low-impact crafts and artwork.

Make sure to plan ahead and keep those invites coming. One of the prevailing narratives is that we’re a burden to our friends and family and at no time do we feel that more than when we notice that the people who love us have stopped inviting us out. We know that accessibility is difficult to find in many public spaces, but do your best to plan ahead when asking us to hang out—make a concerted effort to see to it that we can participate if we wish to. Also, know that even if we can’t make it or cancel often, doesn’t mean that we don’t appreciate being invited. Make sure to check in with us if you see this as an emerging trend, it could be a repeated accessibility issue.

Disability and chronic illness is not like it is in the movies. We’re just people. While media will lead you to believe that there are lessons to be had by being in the presence of someone dealing with a diagnosis, and that we’re all automatically inspirational, it sends the message that we need to be exceptional to be loved or taken seriously. Take us seriously regardless and stand up for our autonomy when others fail to do so. Our health will likely be a lifelong part of who we are with the expected ups and downs. Let life flow. The desire to make our story into something that fits an inspirational narrative is daunting for us and can lead to feelings of failure or further loss—which makes little sense given a diagnosis isn’t a competition.

When it comes to chronic conditions, you can manage symptoms, work hard to reach a place of inner peace, use the anger to change perceptions, but once you start trying to outrun or overcome a disability or illness, you begin to rip yourself apart from the inside out in that pursuit.

Remember that your relationship is unique to the two of you with markers and commonalities that only make sense in that context. It is important to communicate without violating the boundaries your friend has set into place regarding their health. Things may have changed, the expressions of love and friendship may have to be altered, but dig into your relationship down roots and fortify what is there. Accessibility is all about adaptation. Make your friendship accessible.

 

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A Jewish Approach to the Plastic Straw Debate

Image: A person drinks from a plastic straw. (Anemone123/Pixabay)

Every argument that is for [the sake of] heaven’s name, it is destined to endure. But if it is not for [the sake of] heaven’s name — it is not destined to endure. What is [an example of an argument] for [the sake of] heaven’s name? The argument of Hillel and Shammai. What is [an example of an argument] not for [the sake of] heaven’s name? The argument of Korach and all of his congregation. — Pirkei Avot 5:17

The recent disagreement between some environmental activists and disability activists about efforts to ban plastic straws has been food for thought lately.

In brief, environmental activists are concerned about the impact that plastic straws have on the marine environment, especially on the animals in that environment, and they’d like to see an outright ban on plastic straws. Disability activists have pointed out that some people with disabilities need a straw to drink liquids, and that neither the biodegradable paper straws nor rigid metal straws meet their needs. The paper straws tend to biodegrade while still in use, and the metal straws are dangerous for a person with a palsy or an uncertain grip.

That much is a rather standard ethical problem – how are we going to meet two competing sets of legitimate needs?

Let’s look at the issue through a Jewish lens, because there are a number of Jewish values involved. First, the values:

Bal Tashchit – “Do not destroy” is a staple in halakhah (Jewish Law.) It is based in Deuteronomy 20:19–20. The command is given in the context of wartime and forbids the destruction of fruit trees in order to assist in a siege. This principle expands to cover many environmental issues, and it certainly applies here, since (1) the production of plastic is destructive to the environment and (2) plastic waste is destructive to the marine environment.

There is also a strong Jewish tradition for preserving God’s creation, as in this midrash:

13) Look at God’s work – for who can straighten what He has twisted? (Ecclesiastes 7:13). When the Blessed Holy One created the first human, He took him and led him round all the trees of the Garden of Eden and said to him: “Look at My works, how beautiful and praiseworthy they are! And all that I have created, it was for you that I created it. Pay attention that you do not corrupt and destroy My world: if you corrupt it, there is no one to repair it after you. — Kohelet Rabbah 7:13:1

We have to balance those values with the value expressed in this commandment. All human beings are infinitely precious and worthy of care:

(26) And God said, “Let us make human beings in our image, after our likeness. — Genesis 1:26

And specifically, regarding disabled persons, we have very precise direction:

Do not curse the deaf, and do not put a stumbling-block before the blind, but fear your God: I am YHVH. — Leviticus 19:14

With regard to access to nourishment, including liquids:

When you have eaten and are satisfied, you shall bless the Eternal your God for the good land which He gave you. — Deuteronomy 8:10

This last verse describes the act of consumption of nourishment as a complete cycle. First “eat” then “be satisfied” and the “bless.” It is wrong to say to a subset of customers, “This is a place of nourishment, but you will receive no satisfaction, because you are unable to drink without a straw.”

Finally, there is the issue of hospitality. Starbucks management would tell you that they are in “the hospitality business.” They refer to their customers as “guests.” While I realize that Starbucks is not a Jewish business and certainly is not run on halakhic principles, when I hear those words, I cannot help but think of the Jewish value of hachnasat orchim, hospitality. Our role model for hospitality is Abraham our father himself, who ran to greet guests and serve them despite the fact that he was recovering from circumcision. The rabbis underlined the very high value we put on hospitality:

Rav Yehuda said in the name of  Rav: Hospitality toward guests is greater than receiving the Divine Presence, as when Abraham invited his guests it is written: “And he said: Lord, if now I have found favor in Your sight, please pass not from Your servant” (Genesis 18:3). — Shabbat 127a

Conclusion: At this time, it is not possible to meet both sets of needs perfectly. Disabled persons need plastic straws in order to consume liquids. But it is also true that the oceans are in a terrible state. Here are some possible solutions to the dilemma:

  1. If a total ban on the straws is important to the environmentalists, then research needs to be done first to find a true and adequate substitute for the plastic straws. Until then, saying to an entire group of people, “You may only eat at home” is not reasonable.
  2. In the meantime, until a truly adequate substitute is found, those for whom the straws are merely a convenience can help by choosing not to consume plastic straws.
  3. Businesses could supply plastic straws by request but without comment. A server saying  “Oh, so you hate sea turtles!” is attempting to shame the guest. Shaming is cruel and it is generally ineffective in changing behavior.

There are several opportunities for learning within this debate, should we choose to take them:

  1. It is important to learn about the impact of our consumption habits on the seas.
  2.  It is also important to learn about the impact of rigid regulations on people with disabilities. Accomodations for disabilities rarely come in one-size-fits-all packages.

If we are willing to have what our ancestors called “an argument for the sake of heaven’s name,” in which we seek the truth of all aspects of a discussion, and hope to find the best possible solution to a dilemma, we can accomplish wonders. If, on the other hand, we seek to score points, and “win” some illusory prize, we will accomplish nothing,

The choice is ours.

 

 

 

The Art of Staying Present

Image: The flowers in my front yard. Despite the inconveniences of plans made and thwarted, there is still beauty in the world if we choose to notice. Photo: Ruth Adar.

דער מענטש טראַכט און גאָט לאַכט.

Der mentsh trakht un got lakht.

Man plans and God laughs.

This Yiddish saying speaks to all the times we make plans, only to have them collapse in the face of events. I’m meditating on it now as I deal with a new round of body aggravation.

Things had been going so well. After a rough year of pain problems, a new therapy seemed really promising. I got a bit more ambitious about projects. I began getting more exercise.

This past Monday night I noticed I was particularly exhausted in the evening, with a lot of unsteadiness. I didn’t sleep well, and by morning it was clear that a bunch of familiar bio-mechanical problems and pain problems were back with a vengeance. What a drag.

It is so tempting to get caught up in fake moral thinking about these things: What did I “do wrong?” Friends, expressing their concern, say things like, “What did you do?”

What I have learned is that sometimes there is no “what” that I “did.” I can frustrate myself by looking for causality or I can turn my attention to living in the present, paying attention to things as they are. Exercising mindfully and eating mindfully are more challenging when the experience of being in this body is painful or unpleasant. It is an important challenge both for healing and for spiritual well-being.

Judaism pushes us to pay attention to the present moment. Blessings make us stop before we eat to appreciate the food in our hands. Other blessings demand we pay attention to our bodies, to the sun in the sky, to the fragrance of a flower. The day begins not at an abstract time but when the sun rises, and it ends when the sun sets.

Does God really laugh? The Yiddish proverb used to sound cruel to me: “I make plans, and God says, ‘Gotcha!'”

Now I read it a bit differently. I get a little too involved with the future (plans) and God reminds me to stay in the present. It isn’t a cruel laugh; it’s more of a gentle chuckle. I am still learning, still growing, not dead yet!

Guest Post: Planning Accessibility

Image: The author, with her crutch. Photo by Imani Barbarin, all rights reserved.

This guest post is by Imani Barbarin. She is an African American disability rights activist with cerebral palsy. She is currently living in Paris as she graduates the American University of Paris with a Masters in Global Communications. She studies media, branding and online communities. You can find her through her site, CrutchesAndSpice.com. I first encountered Imani on Twitter, and was impressed by the insight she brings to accessibility issues. – Rabbi Adar

I want you to think about how many decisions you’ve made today: from the time you woke up to now, as you read this piece. Did you choose a quick breakfast or to make a more substantial meal? Did you use disposable plates and utensils, or did you use reusables? Public transport, car, or did you decide to walk? When you got to work, did you decide to grab a quick cup of coffee or did you remember to bring a tumbler from home? How many decisions did you plan out, and how many did you make on a whim? For disabled people, like myself, planning is not only necessary but allows us to safely traverse our communities in our daily lives.

Every evening before I go to bed, I take my socks off despite cold feet. I want to make sure that if I wake up in the middle of the night, I don’t slip on the hardwood floors. Speaking of bathrooms, I only take my showers in the morning—after long days, my legs tire and it is no longer safe for me to stand on a wet and slippery surface. When I wake, I have to play a game of chicken between my bladder and my feet. It takes a few minutes for my legs to acclimate to being awake, thus the socks decision from the night before. I get to work using public transport but little decisions that everyday citizens make can make my commute more difficult. Cars and trucks parked in bus lanes mean that buses cannot stop on the curve, making me step up into the bus in traffic (additionally, this bars bus drivers from lowering ramps for wheelchair users). When I use public restrooms, others fail to take care of how much water they drip on the floor making it a dangerous surface for me to walk on. Even kind gestures can be ill advised; when I move my hand from my crutch to open a door before me, I’m opening the door my balance transfers to the handle so someone who pushes it open for me while my hand is on it is actually throwing me off balance.

Just like you and your morning decisions, the accessible choices disabled people make are unique to who they are. Disabled people are experts at planning ahead, but we cannot plan for the abled bodied people who cross our paths and are unfamiliar with the exacting lengths we go through to move as freely as possible throughout the world. It’s difficult for us to develop serious relationships outside our family and community while expressing our needs for accessibility – the types of choices that are whims for other people. If you want to take some of the weight off our minds, first, get to know who we are and (with our permission), ask what is most accessible for us. Also, consider looking into the accessibility of the places you invite us to, and, if you find that we don’t have the energy to attend an event, don’t hesitate to invite us the next time—there’s nothing worse than someone pulling away from you slowly because including you becomes too difficult for them. Lastly, don’t be overwhelmed. We understand that you have had but moments to consider what we’ve spent lifetimes thinking about. With accessibility in mind, we draw together as stronger, more informed communities.

It’s JDAIM – so what’s that?

JDAIM is Jewish Disability Awareness & Inclusion Month.

Jews have been celebrating JDAIM in February for the past ten years. It’s a yearly reminder that we want our synagogues to be, in the words of the prophet Isaiah, “a house of prayer for all people.” (Isaiah 56:7)

I’ve been observing JDAIM this year by dealing with a bunch of disability challenges.

Disability is a tricky topic. It’s very tempting to climb on the “heroic crip” bandwagon, to tell inspiring stories and post a bunch of rah-rah stuff. However, that isn’t about the real lives and real situations of Jews with disability.

The fantasy: I’ve got my scooter, I can go pretty much anywhere, and life is always good. See the rabbi drive up, get out her scoot, and go!

The reality, lately: Can’t sit comfortably in the car. Can’t lift the scooter. Chronic back pain, sciatica, and fatigue are kicking my tuches. Sitting too long at the computer makes everything worse. My 50% hearing is now down to somewhere less than that, but the auditory processing disorder still makes hearing aids a bad idea.

So here are my awareness and inclusion messages. They are phrased as mine, but they apply to many other persons with disabilities, as well:

  1. God bless my congregation for offering streaming Shabbat services over Facebook. I can “attend” even when I can’t attend in person. It isn’t as good, but it is so much better than sitting home wishing I could be there.
  2. If I ask you to repeat something once or twice or even a third time, do just that: repeat it. Don’t restate it, just say exactly what you said but a bit louder, or or a bit clearer, or take your hand away from your mouth.
  3. If I get to an event, please don’t tell me that I look like I’m “doing better” and ask when I’ll be healed. I am having a good day, but I am unlikely to be healed. And actually, I’m OK just as I am.
  4. Don’t abuse “handicap” parking spaces. Don’t use them unless you have a blue card and please don’t crowd them. Don’t park in the loading area next to them, because then some of us can’t get out of the car.
  5. If someone displays the blue card to use those parking spaces, just assume they need it, even if they don’t look it. Many disabilities are invisible.
  6. Please don’t give medical advice or ask nosy medical questions unless you are my doctor. Really. Even if you are sure you have the cure.
  7. Do not improvise “helping” me. Ask me if I need help with something, then believe what I tell you.
  8. Yes, I am at “child height” when I’m on the scooter. That is not an invitation to pat my head or adjust my clothing for me. When people do those things, I spend energy being annoyed that could go to many better uses.
  9. Encourage your congregation to stream services and do other things to make services more accessible to everyone. Is the building accessible? Is there a procedure for making accessibility requests?
  10. Remember that we’re all in this together. There have been Jews with disabilities since the very beginning. The patriarch Isaac was seeing-impaired.  Jacob had a limp. Moses had issues with speech. King Saul had bipolar disorder. Stuff happens. What matters is how we deal with it.

Rabbinic Insight from Chronic Illness

Image:  A woman walks through a greenhouse full of cacti. (Pixabay)

An op-ed appeared in the New York Times a while back. The piece, In My Chronic Illness, I Found a Deeper Meaning, is so good that I would be quite happy for you to stop reading now and go read it – even if you don’t read another word I have to say about it.

Rabbi Elliot Kukla describes the significant challenges of living with chronic illness. He writes about the problems of credibility every one of us with chronic illness face: it’s “in our heads” we are “making it up” we are “dramatic” and/or “lazy” and/or just plain “crazy.” You can hear all about that if you go onto Twitter and search for terms like “chronic illness” or “disability.”

He describes the horror of being a number, of having one’s troubles become “a monetized affair.”  The article would be valuable simply because he articulates all of this so well.

What’s different about this article is that Rabbi Kukla doesn’t stop with an eloquent description of the situation. He keeps moving towards meaning. “We are born needing care, and die needing care, and I am no exception.” Independence is in fact a delusion: we are all interdependent.

He maps a terrain that we will all travel someday, even the most fit and healthy among us. The take-away, though, is something that I think we all need right now: a reminder of the worth of every person.

In a time when human beings are treated as bargaining chips, when a small, wealthy part of humanity seems to care absolutely nothing for the rest, when it is so tempting to star in our own dramas and get lost in our private pain, this article takes the larger view. Go read it.

A Regretful Note to Readers

Image: Gabi and Jojo say, “Time to get up from the desk, Rabbi!”

Regular readers have noticed that I am posting less often. Some have pointed out typos and errors recently. I’m grateful for your readership, and appreciate the assistance in catching mistakes. Many of the mistakes recently have come from hastily written materials that I later edit on my cell phone, lying down. 

The state of my body, especially sciatica which has become near-constant, means that I need to ration my time at the computer very carefully. I now prepare and teach two classes a week at the computer, including email support and a Facebook discussion group. I write divrei Torah regularly for the quarterly CCAR Newsletter. 

I  find that I have to cut back somewhere on the time I spend at my desk. I think this blog is the most responsible place to make one of those cuts.

I will continue to post occasionally and to develop entries that serve my original goal, which was to provide plainly worded brief explanations of Jewish life for those who need answers. Judging from the traffic from search engines of roughly 600 visits here per day, this blog will continue to serve the Jewish People by that means. 

I won’t stop doing other posts entirely, but they will be less frequent. I hope you will understand.