This morning I woke up with a familiar friend, the heavy feeling on my chest reminding me I am never truly in control. I struggled to expand my chest muscles; my legs feel slightly like jelly as I attempt to flex my calf muscles. I surround myself with my mountain of pillows forcing one under one side of my neck that’s rock hard with spasms. I had a feeling my body wasn’t happy yesterday when I attempted to get out of bed and wasn’t able to fully turn my neck.
I should be terrified, muscle pain and difficulty catching ones breath is a harbinger of this world crisis. The virus… rattles through my consciousness briefly, as my experienced inner crip screams, shut up it’s a Myasthenia flair up. I settle into my marshmallow bed waiting for this feeling to pass or at least to sustain my breathing moment to moment. I am not a person one would call calm, I am constantly thinking, planning, the steps I need to accomplish to turn my life from one transition to the next. This is my disability survival skill, my superpower. I really don’t have a choice, I plan because then I will be prepared when the unexpected happens. When the cold, the flu or shear exhaustion hits not like most people but triggers this feeling of Jello.
Thankfully doesn’t happen all the time and when it does it frequently is brief. But it is a gift — I think ahead, have food in the pantry, cleaning supplies bought on sale, children home based entertainment items on standby, programs saved in my cue, remote relationships forged over the years, a plan for my own “Homebound” unexpected collapse. I have never not felt the need to be a super crip. It’s the only way I know how to “make it,” that nagging feeling of economic survival, aware that ultimately no one will take care of me if something more permeate happens. I am on my own, a marriage, friends, family, only can do so much. You take the breaths, you drive the trajectory of your life.
Lately I have struggled with this trajectory post-divorce and worried I would run out of time before I was truly prepared. I had an overwhelming feeling for over a year that a big economic collapse was going to happen and this one felt like I would be swept up into the flow with no control. I was haunted by a singular thread — had I planned enough, done enough, protected my son enough – will I fail and collapse, losing everything. When the virus was announced an ocean away my fear stopped. It’s coming my soul hugged my humming brain, you were right, you can be still and quiet now, you have done your best.
I am not afraid of the heavy feeling on my chest, I can’t, panic only leads to quicksand sucking more energy from every tiny muscle attempting synaptic firing. It’s the only time I flow, sinking in, briefly giving up I must be something, do something – instead I live moment to moment. This is familiar, this is breathless…this is not the virus.
I am a mother with a disability, recently divorced, currently without full time work, in the beginning of a recession. This triggers a deep core engulfing fear, forged in childhood, from the generational notions of success. It feels like a hauntingly familiar history, my first recession was at nearly the same age as my son is now. It coincided with my father starting his own company and my disability emerging. I was keenly aware of the economic fragility of our lives and felt a deep sense of a lack of control over my future.
During many times throughout my childhood I was “Homebound.” This word has power, frequently used as the definition of disability for the purpose of granting government benefits and services. It also is a label that as disabled adults we push back against, many of us strive to be seen as “active” members of our community. We built pillars of our policy existence on “community integration,” economic opportunities and civil rights that so many of us lacked for decades. We have more opportunities than we ever have and yet bias of our economic viability and our worthiness for everything from access to housing, to medical care, is still frequently tied to this word “Homebound.”
Now a small microbe, invisible, labels us all – we are collectively “Homebound.” In many ways, even if for just a moment, this has leveled the playing field of our identities, our notion of what is important, what constitutes success and the fragility of health and life. At some point in our lives we are all likely to experience disability and as we age with that disability, more of us “active” people with disabilities are more consistently going to experience life mostly home. Those of us that have experienced disability in many ways are emotionally privileged to have struggled with these existential fears before. Yet, like times in the past, we are also at the greatest risk to be engulfed by the wave of fear and discrimination.
Government officials, the health care system and local communities will ask ethical questions that will impact our lives for decades to come. Like the virus this process will seem invisible at first, until the system gradually signals that things are restricted, access to education, housing, to equal access to life sustaining and even preventative health care, to economic opportunity, to legal rights, are likely to be permanently impacted around the world. Many of us will be more permanently “homebound” far past the imposed restrictions of this virus due to these policy changes. People with disabilities have worked for decades to move freely within an ablest society. Now that we all debate what it means to freely move in our local communities, and the world, and how this impacts all of us — let’s not forget that people with disabilities have expertise and value, having dealt with this struggle for much of our lives.
Do not be quick to label us as unworthy when we all face the same existential questions, but now it’s your mother, brother, child and spouse that they may be discussing. Think of all of us, even as you get the physical and economic opportunity to again leave the house.
For more information on how people with disabilities’ rights are already being impacted see: The Disability Rights Education and Defense Fund’s (DREDF), March 25, 2020 article,
“You really should have another baby. It would be amazing to have a girl.” She pointed to my 3-year old son bouncing around the room.
It’s true, experiencing the joy of my son sharing his life with a sibling and seeing how both of their lives would be transformed through the interaction would indeed be powerful. Yet, having another child could have a profound impact on our lives. It does for any family. In my case sleepless nights and added stress could have a dramatic toll. It’s not just because I’m an older parent, turning 40 this year, but because of my past experiences.
I am a survivor of post partum trauma, not post partum depression but deep and wounding family trauma. I say this because post partum depression was not what I had and saying so negates my experience with my husband and our collective experience of what happen after my son’s birth.
I did however have pretty severe PTSD after it happened. I have worked hard to embrace the joy of parenthood, to slow time, and to hard wire emotional experiences to my brain of the power of my child experiencing life. As he connected new neural pathways mine fought hard to heal, to survive for myself, for my marriage, and family. I have managed to do that and yet I am reminded on a regular basis by friends and strangers of what I lost. I never got the chance to learn to be a mother without managing the chaos of our lives during those first precious months. It’s something I can never regain. Yet, I am urged by friends to try again. To embrace parenthood the second time around, for the joy and because things will be different and easier since surely we know what to expect.
What they don’t realize is that I know exactly what to expect and the possibility of how damaging it could be for all of us. I have guilt, survivors guilt, not for living but because I am not open to the possibility of a life that isn’t even created.
Doesn’t mean I don’t want it to be different, that I don’t wish I could experience what I have lost. This isn’t a selfish choice, it a necessary one for the collective good of our family. That’s not an answer people want to hear. They don’t understand how wounding the continuous pleads for parenthood can be. I thought I was numb to the comments but I have discovered the more it is said the more it plunges me back to the days when trauma was fresh.
The most painful part of this is my son asking for a sibling. Several times this week he has bounced around the house saying, “ Mommy I want a baby. I want to get up in the middle of the night and feed the baby. Mommy can I have a baby for my birthday pleeeeaaaaase.”
He doesn’t mean a baby doll, he means a sibling. He longs to play, take care of, and have companionship with a living creature that is his size or smaller. Part of this is because his pre-school has had a baby boom and he has seen a gaggle of new babies both from his teachers and fellow classmates, flood the school.
I say he wants companionship from a living creature because in the same breath he mentions a baby he also asks for a dog. “Mommy I want a black and white dog because I have this toy dog for him to play with.”
He seems to also be exploring what I can only describe as the concept of “pairs;” two mammals belong together. He has been asking why a range of animals such as birds, ducks, squirrels, and people are paired.
“ Mommy why are their two [ insert living creature] of them. Mommy why does that [insert living creature] only have one,” asking additional questions with each question I answer.
We have had long conversations about why some animals and people have a partner and why some don’t. Why some families are made up of two people, three people and some have four or more. We talk about how all families are different and that no matter how many people are part of our family we all love each other. These have been challenging and complex conversations. Ultimately it has been a healing way to explore not only my own feelings but also my son’s desires for a sibling.
I don’t have easy answers for him and only hope he will be happy with his life when he gets older. The best response I can come up with so far is,
“It’s not easy to have another baby and sometime even if we really want something we can’t have what we want. Even if we don’t have another baby to play with we can always visit other friends that have babies. When you get to be a big boy you can also help babysit or become a baby doctor. Just because we don’t have another baby doesn’t mean you won’t have a big family. Family is made up of cousins, aunts, uncles, neighbors and lots and lots of friends from school, synagogue and places you have fun at.”
I may not be able to give him a sibling but perhaps in the future we will consider getting a dog. When I asked him if he would also feed a dog and clean up the poop he said, “ Yes mommy they have those nice poopie bags.” My son always has a solution to everything. I hope he finds one for life without a sibling.
This blog post was written for the Disabled Parenting project and posted on March 23rd 2017: http://www.disabledparenting.com/spastic-mama-stay-calm-lead/
Spastic Mama: Stay Calm and Lead On
Over the last several years both do to personal reasons and because I could clearly see the signs of the impending political upheaval that was going to take over, I was filled with anxiety. I couldn’t understand why others didn’t see the signs, the growing discontent among many individuals who felt they had been left behind in the re-blooming of our collapsed economy. During the eight years of the Obama administration a policy revolution occurred that resulted in cultural, social and entitlement reforms that created the potential for fundamental changes in millions of people’s lives. The ability to do this while stabilizing an economy in shambles was truly revolutionary. You can’t have that level of fundamental change without fear. This creates an opportunity for a shift in power, appealing to families that felt the revolution had not been designed with their needs in mind.
For individuals with disabilities who rely on the Affordable Care Act, “Obama Care” and the related expansion of home and community based long-term care services and supports, they are currently in the ultimate crisis for survival. Not just for the roll back in gains made in our health and human services system because of budget cuts, but because the potential for fundamental transformation in the role of government. I discuss the various plans that have been developed in my blog post, “Will They Make Health Care Great Again? Not if They Ignore The Iron Triangle of Health Care!”
I am one of millions of self-employed Americans who has benefited from Obama Care. What makes my story different is that I work in the health care industry. I advise health care firms on how to serve the needs of seniors and people with disabilities. I understand the system from both a patient and professional perspective.
The American Health Care Act’s goal is broader than “repealing Obama Care,” it erodes the overall concept of the federal government’s role in delivering health care and social support services.
It also focuses the insurance market solution on “Consumer Directed Health Plans.” A buzzword long used within the industry — where many, including Representative Paul Ryan, have argued that making individuals pay their “fair share” for health insurance would give them a financial incentive to become “active health care consumers.” They would, it is asserted, take more responsibility to stay healthy and shop around for the best deal for a procedure. That would in turn reduce unnecessary health care spending.
The key mechanism to achieve this is by offering “affordable” coverage to encourage healthy people to buy insurance. In exchange for lower monthly premiums these plans require paying an additional $1,500 up to $5,000 before the insurer will pay for a majority of your care. In order to cover the costs of the deductibles and items not covered by the policy these plans are paired with a savings, or investment account and tax deductions. However, an individual has to have the available income to contribute the account. These sorts of plans were once considered insurance of last resort only, because they provided minimum protection to someone who needed coverage if they were in a catastrophic accident. But since 2003, they have been offered as the solution for the uninsured and cash-strapped employers who can no longer bear the burden of rising premiums. These plans are being marketed as a way to lower costs. But in fact they ultimately increase costs for everyone, because they discourage people from seeking health care until they become very ill.
Even for someone like me, before the Affordable Care Act, it was virtually impossible to “shop around” and compare health plans, let alone shop around for the best deal on a procedure or doctors fees. It’s not because I don’t understand the system, and it’s certainly not for lack of trying. It is because the current system is incredibly complex. Pricing is not transparent, and it varies depending on who —for instance, insurers who get discounted rates from hospitals and doctors—is purchasing the services. There is no uniform, easily accessible way for me to compare costs of care I could get at one hospital versus another, or one doctor as compared to another.
The urge by many congressional members of the need to repeal Obama Care is rooted in the assertion that health care costs are out of control. In my personal experience, my cost went down, while my coverage increased. My experience is not an isolated one and has been confirmed by health policy experts.
No matter what happens with this bill, it is a signal of the continued potential to introduce small incremental changes through other forms of legislation and regulation that could still impact how services are delivered. It is easy to mobilize around what is seen as immediate threat but sustaining a long-term vigilance can be exhausting.
As a policy consultant I spend my life reviewing how policy impacts the design and delivery of services. Implementing policy takes time and seeing the long-term impact on a system as complicated as health care takes even longer. We should not use fear, and political power, as tools to disrupt systems changes we have yet to fully realize the results.
So now that we are in crisis my job is to remain, calm and contemplative of how best I can use my knowledge, strengths, and resources to impact the challenges we will encounter. Not only do I have this responsibility as an individual but also I have this responsibility as a mother. I refuse for my son’s entire childhood to be focused on fear, anxiety and lack of hope. I am not perfect, and I will let the anxiety of the worlds events creep in, for instance the other morning I was not my best when I was yelling at the radio on the way to pre-school. It’s ok for my son to hear mommy concerned, upset, or even angry about what has happened in the world. That’s how you raise a child that is aware of the impact the actions government and society has on the lives of people. I think it’s important to raise a socially conscious individual but I also want to raise one that sees the world for all of the possibilities and how careful incremental, daily, actions can make a difference in the world.
So I choose to take the long view and focus on cultivating love in my household and to try to quell the anxiety as much as I can. My strength, and capacity to reflectively move forward and make change depends on it.
I’m turning forty-next year. When discussing possible plans with a friend of mine she echoed my feelings exactly, “ When you grow up with a disability and you turn forty you deserve a parade.”
A parade not because you are an inspiration, for dragging your body through forty years of physical pain, while attempting to shape your life into a socially acceptable notion of success. A celebration for having the strength to navigate childhood and young adulthood while the whispers of “how does she manage” is echoed from the mouths of strangers, mentors and family. Keeping your identity whole and the dream of possibility alive is what is daunting when you grow up with a disability, especially when your trained to believe the notion of doing anything is a miracle.
The miracle for me is not surviving my disability but that I am a parent. Not for the miracle that I gave birth to my child, but that I have been witness to his transformation from a flutter of feet in my growing belly, to a day dreaming future fireman of three.
I celebrate my survival and his thriving by creating possibilities and memories. I started my year of celebration by traveling to Japan. I found a last minute discounted cruise that went from Vancouver, British Columbia, through Alaska and ending in Japan. I am fortunate that I had the financial resources to make this trip. While not everyone has this ability, several organizations including Mobility International and other organizations exist to promote the international exchange of people with disabilities. Here are the things I learned on my journey:
Cruise ships are accessible traveling hotels on the water. I had always wanted to travel internationally but feared the logistics and fatigue of international flights and dealing with heavy bags. Traveling by cruise ship allowed me to pack my bags once, not have to worry about traveling far for food, have access to laundry, entertainment, and even included childcare, all while enjoying the view on the way to amazing destinations. The best part was once I got to Japan I was already adjusted to the time change. The cruise ship turned the clocks forward one hour each night once we crossed Alaska.
We are in Japan now what do we do?
Once off the cruise ship we spent nine days in Japan. We didn’t want to lug our heavy bags all over Japan, so we used the TA-Q-BIN bag delivery service. Be aware most stores, restaurants, taxi, etc only take cash, rather than credit cards. Most ATMs also don’t accept American ATM cards. Look for 711 stores or convenience stores located everywhere and make sure your bank can increase your daily cash withdraw amount. You do want to bring a credit card for hotels, airlines, etc, but watch the exchange rate and credit card fees. Also don’t forget to notify your bank and credit card companies you will be traveling abroad so they don’t block your cards.
Accessibility of Japan: Japan has several disability related laws including the Basic Law For Persons with Disabilities originally passed in the 1970’s and has been amended since Japan ratified the United Nations Convention of the Rights of Persons with Disabilities (CRPD) in 2014. On April 1st of this year the full impact of the CRPD was realized with Japan’s implementation of the anti-discrimination provisions comprising of two parts, “unjust discrimination” against people with disabilities and a right to ask government agencies and private businesses to take “reasonable accommodation” to remove social barriers for people with disabilities. This, and the upcoming 2020 Olympics, has made training around disability accommodations a priority. Progress in improving the rights of people with disabilities and the social attitudes towards people with disabilities is a critical issue in Japan. As evident in a massacre that occurred on July 26, 2016 when a man wielding a knife broke into Tsukui Yamayuri En care home, for people with disabilities outside of Tokyo and brutally murdered 19 people as they slept, while injuring another 26. Afterwards, he turned himself in to a local police station, with the explanation: “It is better that the disabled disappear.” As described by Mizuki Hsu, in Japan, as well as many other countries, including the US, progress still needs to be made to improve the human rights of people with disabilities.
While disability accommodations are far from perfect, like in the US, Japan’s accessibility laws mandate new construction projects be accessible. I found major train stations, airports, and newer buildings were accessible. But be aware, that many of the train stations have several staircases and while elevators are available it may require a complicated detour to find the right elevator for the correct area of the station.
Many of the temples and historic locations have gravel paths and may not be accessible. But I was amazed that in Kyoto one of the major temples, Higashi Honganji, or, the Eastern Temple of the Original Vow, was retrofitted throughout the property to be accessible. The temple is an UNESCO world heritage site and has surviving masterpieces of architecture from the Azuchi-Momoya Periods and early Edo Period. Another highlight from our trip was on the Sagano Scenic Railway, a sightseeing train in Kyoto that takes you through mountain passes with a view of the rapids of the Hozugawa river. This charming older train had a wheelchair seating area and assistance to board with a portable ramp.
Sleep: Accommodation in Japan usually charged per person. Younger children, under 12, are often free as long as they sleep in the same bed, but if you ask for an extra bed, you’ll be charged for it, but cribs for babies are usually free. We used Airbnb to rent local apartments and if I used a wheelchair I would have had challenges. But I found people to be very friendly and answered all my questions, so it is possible to live like a local with some advance planning. But if you are concerned, most major urban hotels have wheelchair accessible rooms, while smaller “business hotels” and traditional Japanese-style inns (ryokan), may not accommodate wheelchair users. A few great resources to help you with your research include the Accessible Japan website and these videos on traveling in Japan and living in Japan.
Bathrooms: Public toilets in Japan are free and everywhere, and tourist attractions, train stations, even the long distance bullet trains nearly always have a very large wheelchair accessible toilet, often equipped with a change table. Many of the stalls also have “baby chairs” basically a wall-mounted bracket with holes for legs, which is quite handy for briefly restraining a toddler from pushing all of the buttons on Japanese toilets. Japanese toilets can the best form of entertainment for a potty training toddler, it was for mine, but also be aware that many don’t have toilet paper so you may want to bring tissues or wipes.
Language Barriers: I feared language barriers would make navigating around Japan and dealing with my diet restrictions nearly impossible. While not perfect I found with some advance research and the google translate iphone app and Google maps using the transportation tab I was able to navigating where we were going. I also found in general people on trains and the station agents very helpful even with my extremely limited Japanese language skills.
Cell Phone Service: SIM cards allows you to use your own cell phone in Japan, provided your phone has been “unlocked” by calling your cell phone company before you leave. Make sure to ask if your phone (such as an iphone) will work on a Japanese network (most modern phones do). Most SIM cards available to tourists are data-only and do not allow for voice calls (except when using internet-based telephone services such as Skype or Google voice). Offers by the various companies differ on connection speeds, networks used and eventual data transfer limits. They are typically available for a specified time period (e.g. one week) or for a specified maximum amount of data (e.g. 3 GB to be used within a certain time period). SIM cards can be purchased at convenience stores, at airports, but the best deal we found was at a BIC Camera store, an electronic department stores that has locations all over Japan. The SIM card included free Facebook without depleting my data use. Having a cell phone with data was critical, especially when navigating streets and transportation and using translation apps.
Parenting fears: Traveling anywhere with a toddler is challenging but traveling abroad was unthinkable. What if he misbehaves? What if I loose him? Will he enjoy the activities or will I be dragging him everywhere? The Japanese word for discipline is “shitsuke,” which can also refer to good manners or to planting straight lines of seeds in gardening or farming. This was my misguided perception of parenting in Japan. I figured I was expected to keep my child perfectly manicured and in check at all times: running around yelling in trains or restaurants at anytime would not be acceptable and would earn me cold stares and harsh treatment. Indeed, I had frequently experienced this in the US.
Even during the cruise, I was told by an American couple, “I guess it’s politically incorrect to tell you to control your child.”
If anything, I experienced the opposite in Japan with either people ignoring typical toddler bad behavior entirely or smiling and saying he was cute or a clever active child. Teaching my son to say his name in Japanese helped tremendously, resulting in giggles from many people and they reinforced his good behavior when he received countless treats.
Navigating Japan with a Toddler: Leave your giant stroller at home, and opt for an umbrella stroller, but use it sparingly. City sidewalks are busy, temple and shrine paths are frequently gravel, trains are crowded (impossibly so in rush hour), and many locations including department stores, museums, zoos and many attractions have free strollers. Trains are entertainment all on their own. The Japanese Railway (JR) operates local trains and long distance Shinkansen (Bullet train) that allows long distance travel at lightening speed throughout Japan. The Bullet trains have plush seats that can be turned round by 180 degrees, toilets, phones and even a food cart on board. On trains and buses, children under 6 travel for free and children under 12 are half price. You can buy a JR Rail Pass in advance making it easier to deal with ticket purchases or buy a JR’s Suica Smart Card once in Japan. You may find some local trains that don’t take the JR rail pass so you may have to buy additional train tickets for local suburbs.
Things to Do: Did I mention the trains? Besides the bullet train, you can ride the elevated Yurikamome and Tokyo Monorail lines or visit the Saitama’s or Kyoto’s massive Railway Museums or visit the Tokyo Toy and nearby fire museum. Aquariums, Zoos and Animal Sanctuaries are throughout Japan and children under 6 are often free, or half price. Japanese animation is more than just Hello Kitty, the Ghibli Museum near Tokyo is a place of pilgrimage that should not be missed. Technology in all forms including robots is showcased in many museums and corporate headquarters such as Mazda, and Toyota. My son loved all the vending machines, toy machines, and especially the purikura machines (Japanese-style photo booth). The magic is that once you have taken your photos, you can alter or decorate them on a digital screen with handwritten messages and wide variety of effects such as adding mustaches, accessories, sparkles, or backgrounds, before printing them out as stickers or photos or emailing them to yourself in digital form. We didn’t visit, but I am sure it would have been a big hit, a Geemu-Sentaa, game center. The Japanese video arcades often include physical games
Dancing-or drumming-type rhythm games, grabber games to win stuffed animals and often have Karaoke or bowling.
Eat: You will never go hungry for delicious affordable food as long as your near a train station, from bento boxes (ekiben), filled with local specialties, to ramen stalls paid for via a vending machine and picked up at a counter, to elegant displays of sushi and tea time sweets, you will find culinary delights at every turn. Enjoying a delicious ekiben while we watched the scenery go by was one of the highlights of our trip.
Hospitals and Health Clinics: My husband broke his foot on the trip so we got to experience Japan’s health care system. He was seen in a local hospital emergency room clinic, called a kinkyūka. To make sure we didn’t have a language barrier we called in advance and asked, “Eigo o hanasemasu ka?” (do you speak English). The person we spoke to arranged a specific time we should arrive. We had travel insurance, which will reimburse us for the cost of the care, but we were required to pay cash, around $100 (10,478 Yen) for an x-ray and consult. Like most hospitals the wait was around three-hours. The US Embassy in Japan maintains a list of English-speaking clinics throughout the country, and the Nihongo de Care-Navi can translate most medical terminology. For life-threatening emergencies, or if you need an ambulance, call 119 (not 911, for police dial 110), which has English-speaking operators. If you need a prescriptions (shohōsen) you will take it to a pharmacy (yakkyoku).
This blog post was featured on the Disabled Parenting Project on July 19th, 2016 and can be found here: http://www.disabledparenting.com/ada-turning-26-rights-parent-not-protected/
Twenty-six years ago, through the Americans with Disabilities Act (ADA), our nation committed itself to eliminating discrimination against people with disabilities. Despite the tremendous progress we have made in improving the accessibility of our streets, buildings, and public transportation, the ADA has not protected the rights of parents with disabilities. The ADA and other disability rights legislation do not explicitly protect the rights of individuals with disabilities to be parents. Most people don’t have their fundamental rights to be parents questioned. Yet, for many individuals with disabilities, becoming a parent is often actively interfered with and overtly discouraged.
Why is becoming a parent and maintaining parental status such a fundamental problem for people with disabilities? Research suggests that parents with disabilities are stigmatized because of assumptions about parenting capabilities, and these parents are often held to a higher standard of parenting than non-disabled parents.
As a parent with a disability, I fundamentally am aware of how I parent and how I am perceived. A fear shared by many, unfortunately confirmed a few weeks after my son was born. I detailed my experience on my blog in my post: “Life on Hold.”
I have experienced the misguided attempt to have me “prove” that I am a good parent as rational for withholding childcare assistance that any parent may need.
When my son was around eight months old I got a terrible flu. I was already exhausted and this flu sent my body into true rebellion. For 48 hours I felt like jelly, I melted into my bed feeling as if my muscles were hanging off my body.
Like many moms, when you get sick you need help managing your busy life with a baby. I turned to a family member for support, which they provided, for both my baby and me. But I heard an expectation around childcare I didn’t expect:
“I don’t treat you like you have a disability. I push you to do things that maybe you might not think you can because of your disability. I don’t help you out that much with your son because I know you can be a mom.”
It was a frustrating conversation and shocking realization that someone, so close to me, indeed so fundamental to my daily life, could have such a lack of understanding of the meaning of assistance when you have a disability.
I have Myasthenia Gravis, a non-progressive form of Muscular Dystrophy, I got sick at 8 and diagnosed at 18. For the most part, unless you inhabited my body, to the outside observer you might not be aware of how my condition impacts my daily life. Since my condition is autoimmune, my experience of symptoms can vary based on what is happening with my body. All women experience exhaustion and fatigue during the first year of a having baby, whether you have a disability or not. No one would say to these women, “I don’t give you help… or think you should hire help, because that would be telling you that you are a fake mom, you’re not living up, growing into your ability to learn to be a mom.”
My family member’s view of my need for assistance, whether through a family member, or a personal care assistant (also called attendant or caregiver), is a view shared by a significant majority of the population.
Needing help is linked to dependency. Temporary dependency, such as the case of limited illness or motherhood, is acceptable but the need for permanent, ongoing assistance quickly invokes fear of feasibility, fundamentally linked to the ability to pay. The fear of violating the bootstrapped, self reliant, American identity, to be reliant, makes you a member of the welfare system. This combined by the frequently invoked image of the “silver storm” – the ocean of baby boomers aging into needing long-term care assistance, relying on all of us to pay for this assistance through our social services system, inevitably bankrupting our government and plunging our society into economic doom – creates fear of “dependent parents with disabilities.”
Let me be clear, not all people with disabilities need assistance with their own daily personal needs and very few rely on public sources of money to hire someone to assist them in taking care of these needs. As for any parent, finding reliable and affordable childcare can be a challenge.
Lesley Stahl, best known for her work on 60 Minutes recently released the book, “Becoming Grandma: The Joys and Science of the New Grandparenting,” urges boomers to embrace the mutual benefits of helping their children provide care to the new generation. Stahl acknowledges the economic need and social benefit of providing this critical support.
Yet, what if you don’t have a parent to provide assistance with childcare? Or what if you already require daily assistance for your own needs and now have a child? Many would call into question the fundamental right to have a child. Indeed, a history of government-sanctioned sterilization is a not so distant reality for many people with disabilities.
People without disabilities aren’t questioned if they have the ability to be “good parents” – i.e., the ability to develop thriving, social beneficial, offspring. Why? It’s assumed they will be wholly, and completely responsible for the economic satiability of children. This is a fallacy – we have a socially acceptable notion of public-financed education and other community/supported programs designed to help children thrive.
Many parents grow into their knowledge, ability, and role of caring for their offspring. They are given permission to learn their weaknesses, to know when, and how to ask for help, guidance, and yes – gasp – actual care. Some rely on paid help, subsidized childcare, and childcare exchanges both informally and formally through parenting co-ops. Yet, when it comes to raising children these non-disabled counterparts are not held to the same stigma associated with getting childcare assistance.
Did it ever occur to my family member, or for that matter, society as a whole, perhaps parents with disabilities have a far greater advantage as parents, because we acknowledge our skills and have inherit practice in knowing when and how to ask for help? Help is available, to learn adaptive ways of parenting, that don’t necessarily wholly rely on others. Organizations like Through the Looking Glass, the national resource center for parents with disabilities help parents find adaptive ways to navigate some of the physicality of parenting.
It is widely-accepted that our displaced, over-scheduled, over-worked society has eroded family-based childcare support. For years, alarms have sounded for affordable childcare options. So, why doesn’t this fundamental question apply to parents with disabilities, without evoking the notion of dependency shame?!
If we are going to ensure the goals of the Americans with Disabilities Act (ADA), we still need to eliminate discrimination against parents with disabilities and continue to invest in and develop support services for all parents so we can promote the safety, well-being, resilience, and healthy development of all children.
In the wee hours of Jan 5th I heard the whimpers coming from my son’s room. It’s a sound that instantly rouses a mother from her bed, the call of a sick child. For the next several hours tell the dim dawn light filled our windows I tended to his shivers and sickness that are the clear signs of the flu. Finally as the fever broke he fell asleep. Like any mother I was concerned, monitoring the fever for signs of needing to go to the hospital. My relief when his fever broke should have allowed me to drift to sleep. Not this morning. I was aware that today was the day the new Congress could vote to begin the process of repealing the Affordable Care Act, Obama Care.
Like many Americans I depend on the reforms created by this historic law. When I left my job over a decade ago, to start my own small business, my income strained under the weight of COBRA premiums. Despite the cost, I was thankful to have coverage at all. I have a pre-existing condition, a form of Muscular Dystrophy called Myasthenia Gravis. Despite this diagnosis I am completely healthy and rarely go to the doctor.
COBRA, and extensions of COBRA allowed me to have comprehensive coverage for a few years. Once it expired I had limited options, insurance through the California’s High Risk Pool, or a handful of heath plans that were required to be offered under California law (HIPAA Individual Conversion Plans ), sold in the private market that allowed coverage of people with pre-existing conditions. Because both of these options primarily covered only individuals with pre-existing conditions they were horribly expensive and had limited coverage. Limited coverage meant many things including having a baby was not covered. I literally owe the birth of my son to Obama Care.
I am very aware of the impact of no, or limited health coverage, has on a family. As a child I spent more than ten years going to hundreds of doctors to find a diagnosis for my disability. My father was drowning in my medical bills. Our dining room became a medical billing office. My dad spent many evenings with piles of insurance paperwork spread across the table, sorting through box after box to see if this or that bill had been paid or if the insurance company had reimbursed us. We had insurance and yet were in a constant financial crisis. My family was underinsured long before the health policy community became aware of the problem. Whenever my parents argued about money, I thought it was my fault. I once overheard my father lament, “If it weren’t for all her medical bills, we would be okay.” I worried that my health problems was resulting in my family going hungry.
Depending on who you are and your needs, you will likely have a different view of how your access to, quality of, and cost of health care, has improved or become worsened since the passage Affordable Care Act, Obama Care.
Your experience is impacted by the Iron Triangle of Health Care, three components, access, cost, and quality, that are interrelated whereas you attempt to change one and you impact the others.
You can make the health care system cheaper (improve cost), but that can happen only if I you reduce access in some way or reduce quality. You can improve quality, but that will either result in increased costs or reduced access.
Anyone who tells you that they care provide health care for everyone, improve quality, and also reduce costs is in denial or misleading you. So how do you judge if the Trump Administration will make Health Care Great Again? A way to judge the plans is how much they ignore the Iron Triangle. If they want to cut costs, that’s fine, but if they propose to do it without decreasing access or decreasing quality, unlikely.
The Trump Administration will likely be based on prior Republican’s proposals including House speaker Paul Ryan’s, “A Better Way” proposal, which seeks to reduce spending on the three core pillars of health care in the US.
Health Insurance: Changes to Obama Care will likely reduce or eliminate coverage for millions of Americans. One estimate, by the RAND Corp., suggests it will eliminate coverage for 16 million people, with a particularly tough impact on people with serious medical conditions who would face higher out-of-pocket charges.
Medicaid: State’s provide access to health care for millions of low income American’s and provides critical access to long-term care services for seniors and people with disabilities. State’s ability to provide these services is dependent on financial support by the federal government. If federal support is reduced it is likely State’s will eliminate many benefits and eliminate coverage for 25 million American’s. The Children’s Health Insurance Program (CHIP), which provides health care coverage for children from low-income families also comes up for reauthorization in 2017, and Trump opposition could end CHIP, potentially leaving 8.4 million children without coverage.
Medicare: Is a single-payer, national social insurance program, administered by the federal government since 1966. Medicare guarantees health coverage at a certain level with additional coverage purchased through supplemental insurance. The government contracts with private insurance companies to administer the program. In 2015, Medicare provided health insurance for over 55 million—46 million people age 65 and older and nine million younger people with disabilities. In order to get access to Medicare you had to have worked and pay money into the social security system. Speaker Paul Ryan’s plan would create, “premium support” system, under which each senior would get a fixed amount of money, a voucher, to purchase health insurance. While it is not clear the full impact of Speaker Ryan’s plan, but he is likely to raise the age of eligibility and potentially increase costs for many seniors, particularly those with chronic health conditions.
Let’s send a message to President Trump and Congress that health care is an Iron Triangle –don’t ignore the health and welfare of millions of Americans just to save money.
I’m turning forty-next year. A 40th birthday is a major milestone for anyone but as a person with a disability I am acutely aware of the possibilities and fragility of life. I have lost many friends and admired disability rights leaders over the last several years. Loss is sadly all too common in our community. Experiencing loss shapes my view of the world. I live life with an ever-present shadow that makes me aware of my accomplishments and embrace life with a sense urgency to leave nothing unsaid or dreams unfulfilled. I have felt a sense of urgency to make sure the accomplishments of my friends aren’t forgotten. Our community is not traditionally celebrated like other community leaders. We do not have a video of in memoriam like they do annually at the Oscars. I want my son to know the impact these people have had on the world. Below is my gift to my son and in respect and gratitude to the leaders that have come before me — may their memories be a blessing.
Never Forget Your Friends
Let me tell you about some of mommy’s friends that made life better for you and me. They have made sure that people with disabilities can be who ever they want to be.
First let me tell you about Ed, when he was a student at University of California at Berkley, people told him he couldn’t live where all the other students wanted to be. Ed and others thought that wasn’t right. So he help start a movement known today, as Independent Living and it spread across the USA.
Now people all over the world say that people with disabilities should have the same rights, to live, and to work, and to have civil rights. Ed was not the first, and he won’t be the last, of people who made life better for you and for me. So let me tell you about a few people and what they meant to me.
Paul was a friend that mommy held dear. He was a teacher at a big University. He documented our history. He wrote many books and told stories to all about how people with disabilities could do it all.
My friend Laurie was a very nice lady too. She worked with mommy a long time ago at a center where people with disabilities go. Community Access Living is what it is called where people like mommy can go and get help, to learn where to find housing and use the bus, or just hang out with people just like us. Laurie was a mommy before me and she helped mommy learn how amazing it could be.
Richard was funny, as funny can be. Richard made sure all people could use buses and trains and planes, working for the Department of Transportation he helped us get where we needed to go. He also helped us in an emergency; to make sure people are protected no matter what their ability.
My friend Greg was the man with the smooth voice. Who had his own radio show, to tell everyone how people with disabilities Roll. Mommy loved hearing the stories everyone told. Then one day Greg asks me to be on the radio. Mommy was scared and spoke way to fast but I was proud to use my voice at last. Greg helped mommy feel part of a community and help me discover who I wanted to be.
My friend Jamie is the next person I want to say everyone should remember her work in a special way. Jamie worked for a new agency, Administration on Community Living, where President Obama had all programs go, to help people with disabilities thrive and to grow. Jamie worked with mommy to improve long-term care and tell people everywhere we need quality health care.
Catherine was a lady who loved you very much. She loved all babies and children oh so much. She was a great leader who helped people with disabilities get jobs, including actors with disabilities, so Hollywood would know we are in charge. She cofounded YLF, mentoring students with disabilities, so they could become the leaders they wanted to be.
Scott was man always on the go. He travelled the world, far and wide, helping to make sure we all had pride. He changed the travel industry and made sure we could go to all the fun places where people wanted to be.
My friend Larry fought for our rights the only way a lawyer can fight. He founded a firm called DRA that made sure companies and cities would pay, for things they should be doing, but don’t anyway. That little ramp that helps us go from street to street, Larry helped make sure those were complete. He made sure friends can read books, even on- line, o my dear children as you go to sleep tonight, always remember to hug all your friends tight. Tell your friends why you love them so much and why they make life better for all of us.everyone can go to movies and we can vote anywhere, every time.
These are some people that meant a lot to me, that made our lives better for you and for me. So my dear children as you go to sleep tonight, always remember to hug all your friends tight. Tell your friends why you love them so much and why they make life better for all of us.
I am honored to have been featured as a guest blogger for the Disabled Parenting Project. The blog below was published on June 28th 2016 . See link to the blog post and others at http://www.disabledparenting.com/author/anne-cohen/
Spastic Mama: The Public Parent
It was a sweltering day, with blurred eyed shoppers navigating through our local farmers market. My son howled for strawberry lemonade — waiting in a long line with a squirmy three year old, keeping patience among a herd of thirsty adults was a challenge.
“Why do we wait mommy?” My son pleaded, shoving to the front of the line.
“Because other people are thirsty too. Look, here is a mommy; she will have a baby soon. She needs lemonade for the baby and she is in front of us.” I smiled at a clearly exhausted very pregnant mom, who also had a toddler anxiously squirming.
I offered my son water. He shoved it away and paused, wide eyed. “BABY IS THRISTY!” he shouted “Go go mommy, baby thirsty.” The whole line laughed.
The mom and I began to have the typical pre birth chat. When is your do date? How was your first birth? She asked about my birth.
“He was very late,” I said.
“Did you have a C-section?” The mom asked with a sympathetic look on her face.
“Yes.” I said.
Suddenly another women anxiously jumped into the conversation…
“Oh have you read that book that talks about how bad C-sections are for a baby. I had no idea of the consequences for an infant’s health. Are you feeding him different foods so he doesn’t develop allergies.” She paused awaiting a reassuring answer.
“I didn’t have much of a choice.” I said looking at her with raised eyebrows, trying to convey my surprise and annoyance.
“Well did you save your placenta for encapsulation? You know that’s critical for his immune system,” she said raising her voice.
Thankfully it was our turn at the front of the line so managing the lemonade order abruptly ended the conversation. I fully expected her to follow me down the street.
Perhaps because I live in California I am more prone to these types of encounters. From conception well into childhood, parenthood and the decisions we make become part of the public conversation– our actions, or lack of them, become judgment of our character, our capabilities as parents and by extension competence and respectability as adults.
This is not my only public assault I have experienced. It has occurred frequently around whether or not to have a second child. I have a physical disability, but it may not be apparent unless someone sees me use my arms or if I am having a particularly bad day and I have difficulty walking. On days I look “able bodied” I have been urged to have another child, questioned why I don’t have one yet, scolded for depriving my child of a needed sibling. In one of the worst experiences I had a grandmother follow me through the mall telling me of the advantages of a second child and providing all of the consequences for my child’s future because of my selfish behavior. None of my explanations provided relief of this verbal assault. It wasn’t until my son literally ran away did I escape.
Many people would say, ignore these people; tell them it is none of their business, it’s easier said that done when at times it occurs on a weekly basis. For a variety of reasons, none of which are disability related, I most likely won’t be having a second child. This is a heart breaking decision and I am very aware of both the pros and cons. I have a sibling and always thought my child would have the same. I have had to accept my decision and mourn the “loss.” Yet, the healing and acceptance of this decision is painful when my choice is part of public conversation and private urging by friends.
As if this isn’t challenging enough I have to deal with people’s opposite judgment when they discover I have a disability.
“Your lucky to have one”
“How can you expect to manage with two.”
“Well you won’t want them to be disabled.”
“Of course you’re not having more.”
“Is it hard for you to manage?”
“You must be tired.”
“You are an inspiration.”
“You are amazing.”
“I feel so bad for you.”
“How can you keep up with him?”
“Does he act out because you can’t keep up with him?”
Why is public judgment of parenting so present and yet help with the daily tasks of parenting in general not part of community support? It takes a village to judge parents on how to raise a child, but we do not have a village to help us care for them.