Tuesday, August 8, 2023

Free Virtual Summit on Travel Featuring My Perspective: Access Begins August 14

 Hi all,

I recently (in a pre-recorded interview) shared my perspective as a wheelchair user and my experiences with travel for this free, family-friendly virtual summit on Zoom! You can access the material beginning August 14 and there is a panel to benefit both families with and without disabled members! While I am forever shy to embrace the term *expert*, I hope my experiences are helpful. 


Unlock Your Dream Vacation with the Stress Free Family Vacations Event!

Do you daydream about your perfect family vacation? Imagine the joy, the laughter, the unforgettable memories… Now, imagine achieving all this without the typical stress that accompanies the planning and execution of such trips. Sounds like a dream? Well, we're here to make it a reality!

We're thrilled to invite you to our special event - 
Stress Free Family Vacations! Join us! Hosted by the esteemed Vacation Planning Coach, Jaime Kelley, this free event aims to redefine your family travel experience. Join Jaime and a handpicked team of seasoned travel experts (including yours truly) as we share invaluable insights, insider tips, and effective strategies to transform your travel experiences.

Whether you dream of sun-soaked beaches or snow-capped mountains, whether you're a seasoned globetrotter or a first-time traveler, this event is tailor-made for you! Learn how to:

  • Deepen family bonds during vacations.

  • Minimize stress in planning and managing family trips. 
  • Create unforgettable family memories. 
  • Save time and money with insider tips. 
  • Navigate new destinations with confidence. 

Join us as we unlock the secret to stress-free family vacations and turn your travel dreams into reality. Sign up today by clicking here and embark on a journey towards happier, more fulfilling family travels!

A blue square infographic featuring photos of me and Jaime Kelly for a virual event on travel beginning 8/14

                            ID: a blue infographic with a photo of me and Jaime Kelly advertising a free virtual                                         event about travel starting August 14.

Monday, July 3, 2023

When Are We Going to Talk About Care Recipient Burnout?

                                                                                                                          July 1, 2023


We’ve all heard of caregiver burnout. The Cleveland Clinic defines this phenomenon as a “state of physical, mental, and emotional exhaustion” caused by the demands of caring for another person. With our country experiencing a historic caregiver shortage and nearly 1 in 3 Americans leaving the workforce to provide family care, this is a pressing and long-overdue conversation. 


Among paid caregivers, wages are low and most often position these essential workers live at the poverty line. The inability to make ends meet on these meager salaries perpetuates a desperate cycle of unmet needs from all angles. 


Yet something crucial is missing from our societal discourse: where is the discussion about care recipient burnout?


As one of millions of Americans in need of ongoing personal care support, I can attest that the strain of needing assistance with nearly every aspect of my existence, from taking a shower to scratching my back, is ever-present, despite my loving and devoted family and my relatively good luck finding reliable paid staff. 


I frequently joke that maintaining this body is like the group project that never ends, with some project participants rotating faster than I’d like and the pervasive concern that my MVP groupmates (Mom and Dad) will suffer crumbling backs and necks on my behalf. Worse even is the knowing that I will not be able to wipe their butts in return when the time comes. 


And then of course, there is the nearly unspeakable truth that disabled people with high support needs are not given the luxury of a clear future beyond their parents or other aging primary caregivers. 


With affordable, accessible housing nearly non-existent, recreational programs for disabled adults sorely limited, and access to covered personal care services intricately intertwined with varying degrees of Medicaid-related poverty, looking too far beyond the next day ahead can feel like a herculean task for many of us. 


Writing an ad to find a new personal care assistant feels like a weird cross between a resumé, a dating profile, and a job description, but it’s not some abstract “project in development” or quarterly sales report that rides on a smart hiring decision, it’s your life. 


Come across warm and friendly, but not so friendly that your new hire has no boundaries.


Weed out all the applicants who seem afraid of or at least vaguely bothered by your pint-sized dog.


Reiterate that yes, there is lifting involved. 


No, this is not private pay. 


Yes, experience is great, but not necessary.


OH FOR THE LOVE OF GOD, immediately scrap any applications with the words “angel,” “tender-hearted”, “befriending the handicapped” or “special way with those in need.”


Let down gently those applicants who seem disappointed that you are not an octogenarian paying $60 an hour for a TV watching, grocery fetching “companion.”


And back to the dating profile comparison, silently pray that your most promising applicant doesn’t promptly ghost you upon glancing at the large packet of unfailingly bureaucratic paperwork. 


Finding the right person feels a bit like shouting into the void and hoping for a response.


 In practice it looks more like selling your “care pitch” on Indeed, on college campus career boards, and in places you once thought were only meant for selling crusty couches in a dark alley, like Craigslist, while hoping you haven’t unwittingly caught the attention of an axe murderer. 


Hmmm… you think, maybe a pastel Instagram post created on Canva using a charming photo of you and your dog will draw the ideal clothes changer, butt wiper, and shower giver into your orbit.


If you’re lucky enough to find The One, you dread the moment they inevitably take a higher paying job from the very day they begin working. 


This dizzying care-ousel spins onward against the backdrop of a constant battle to convince the State that you are worth caring for in the first place, with a nameless, faceless Medicaid minion eager to reduce the hours of help they begrudgingly award you for purposes of staying alive. 


And still, you must carry on juggling the many tasks inherent to being a person apart from care arrangement, tasks that do not politely cease to exist because the long-term care system is a fiery dumpster of despair. 


Medical appointments. 


Follow ups on wheelchair parts that seem to be floating in the abyss.


Family obligations.


Medication refills. 


Organizing your disastrous mountain of catheters and syringes.


Maintaining your friendships.


Ironically, most of these auxiliary tasks cannot be accomplished without a reliable care team.


Are you stressed out yet? 


Burnt out, even?


Maybe you’d like to cry about it in the shower.


Well, I have awkward news to share. You can’t, unless someone puts you in the shower, and even then, you won’t be alone, and will likely feel pressured to hold it together, as not to make your assistant uncomfortable at the sight of your raw emotion.


That’s another strange feature of this existence as a care recipient… even in my most fragile moments… the unexpected death of a college friend, the slow, heart- wrenching decline of my beloved grandmother and later, her death, the occasional afternoon when I have simply had enough of the unrelenting nerve pain dripping its acidic terror across the back of my legs…


Even then, I will have a witness. 


Do you know what that’s like?


Despite the undeniable anxiety, grit, and Squidward meme- level nocturnal rumination involved in arranging care and trusting your body to a stranger, a quick Google search for “care recipient burnout” yields few results… and typically redirects to thousands of thinkpieces, blog posts, and Instagram reels on the exhaustion felt by the caregiver alone. 


It is almost as though we are invisible to the media, to the government, and to average citizens, most of whom are content to let our patchwork care system crumble until it affects them personally. 


With the paltry selection of existing media coverage about care recipients mainly focused on elders, the young face an even more isolating and draining experience, especially those who have never for even a moment known a life without needing care.


For us, arranging caregivers is not a “maybe” task in the distant future, reserved for the last two years of a lifetime. 


It is a lifelong certainty with no days off, a commitment we cannot abandon without abandoning ourselves. 


I want to be clear that I have a good life in spite of and because of my disabilities. 


I believe that being a care recipient has given me a better understanding of what it means to be alive. 


I am more equipped to meet others in their suffering and in their realizations of our glorious human fragility.


I am grateful to understand at a younger age than most do that nobody, not even people with blue-ribbon can-do attitudes, moves through this world alone. 


And still, being a care recipient from the moment I burst into being is so, so, so hard. 


There are few spaces devoted to exploring this particular stress and organizations in the care space seldom ponder the burden shouldered by care recipients. 


Mental health counselors and psychologists remain ill-equipped to wrestle with this specific stressor that is all at once unique and astoundingly common. 


News articles, documentaries, and photo essays rarely explore the opportunities stolen from us by a care system based in poverty… rarely consider the ways the receipt of care has fundamentally altered our identities, our relationships, and our concepts of privacy, autonomy, and intimacy. 


There is hardly a mention anywhere of educations cut short, jobs lost, and social lives made minimal by the chronic shortage of reliable care. 


Even some people within the disability sphere are quick to attribute these snuffed chances and fizzled dreams to a lackluster effort in the pursuit of #IndependentLiving, a concept which I should note can only look the way they think is worthy of praise.


Most of our non-disabled peers do not engage with the topic of care at all, as if they are afraid that if they look too long in our direction, they may become us. 


They have told us, often overtly, that needing assistance with showering, using the bathroom, and eating, to them, represents an unacceptable loss of dignity.


Their discomfort and tacit disgust at the thought of needing care serves to ensure that our stories and our struggles remain unseen and unheard.


I am resolute in my assertion that we must continue to discuss both caregiver burnout and our best efforts to combat it.


But as the care crisis rages on, we can’t forget another equally valid perspective at the center of the storm: that of the care recipient. 


Let us turn our well-deserved frustrations away from each other and toward the powerful bureaucrats who will gladly sacrifice our well-being to save a dime.


We are fighting the same grueling, perpetual battle while politicians casually divest from our survival. 


Care recipients like me are rarely asked for their opinions on the subject, but let me make mine clear: Caregiver burnout is real, and this problem demands compassionate solutions. 


But caregivers are not the only ones fighting their way through the flames. 


Care recipients also live in the midst of a five-alarm fire, and we too are burnt to a crisp.




Sunday, April 9, 2023

Writer, Producer, and Director Anna Pakman Brings Authentic Disability Representation (and Plenty of Humor) in New Romance Flick, "Cripfished"

 In celebration of the 10th Annual Easterseals Disability Film Challenge, founded by Nic Novicki, I caught up with writer, director, and producer Anna Pakman about her new project, a romance film called “Cripfished” which premiered at this year’s festival. Pakman, who has cerebral palsy, is a longtime advocate for authentic disability representation, with “Cripfished” featuring talented disabled performers in both of the film’s lead roles.


 Pakman invites us, in her words, to “discover the love story” of Logan, described as a “non-binary serial dater” (Melissa Jennifer Gonzales, “Seeking Alice”) and Amy (Bree Klauser, Apple TV’s “SEE”, “Phreaks” on Audible), a visually impaired disability advocate. Logan, who will stop at nothing to win a date with Amy, pretends to be blind on a dating app, against the advice of (most) of their friends, and hilarity ensues. From this fateful decision, the film’s title is born, with “Cripfished” being a wink to two modern phenomena: “catfishing” and “cripface.” States Pakman, “catfishing, for anyone who doesn’t know or hasn’t seen the popular MTV show, is this online dating phenomenon where people create a persona online but when they show up in real life, they’re someone else completely.” She adds that “cripface,” a practice bemoaned by many in the disability community, occurs when [“they Hollywood filmmakers] cast someone who doesn’t have a disability to play a disabled character,” which Pakman emphasizes will “shut out actors with disabilities from being part of those projects.” 


As a writer, director, and passionate cinephile, will have no such thing, adding that the role of Logan is played by an autistic actor and Amy by an actor who is legally blind both onscreen and in “real life.” Authenticity beyond the disability perspective is also important to Pakman, who shared that both characters, who are queer, are played by queer performers. Pakman calls Hollywood’s widespread use of “cripface” “particularly troubling” given that well-known actors (see: Eddie Redmayne in “The Theory of Everything”) often go on to win Oscars for essentially trying on an identity while hundreds, maybe thousands, of gifted actors who are actually disabled struggle to break into the business. 


While Hollywood has overwhelmingly come to recognize the harm in actors’ pretending to be a different ethnicity, understanding that it is also unacceptable for non-disabled actors to imitate disability has been harder to foster. Says Pakman, “we don’t cast people who are Caucasian as being an ethnic minority and for good reason. One of the things I wanted to show [in my film] is that it’s also not okay to do that with disability.” Pakman credits her cast for helping her ensure the realistic portrayal of identities she does not share, calling the script “a team effort.” She praises Klauser, who is blind, for her insights in creating an authentic blind character.


Asked what else inspired her plotline, Pakman recounts a real-life catfish incident during which her date pretended to live in her neighborhood and was later revealed to be visiting from another country. Audiences both disabled and non-disabled will relate given the unpredictable and often absurd cyber landscape for today’s daters. The film’s humorous take of our app- happy social lives, propelled by a diverse female and non-binary cast, is perhaps the ultimate example of modern love. Not so long ago, Pakman and I joke, online dating was only for those looking to encounter an axe murderer. With online dating now mainstream, Pakman adds that technology has both “brought us closer together” and allowed unacceptable behavior, like that of the catfish, “to proliferate.” When presented with this year’s Film Challenge theme of romance, Pakman and her colleagues decided on a comedic tone for the project in an effort to capitalize on the team’s strengths. Featured in supporting roles are internationally renowned comedian Maysoon Zayid (“General Hospital,” CNN), Shashi Bangera, (“Sesame Street,” “Kelly & Kal”), Josey Miller, and Jillian Mercado from hit show “L Word: Generation Q”). Pakman emphasizes that she often tweaks her scripts based on who she feels is the best fit for the role, stating that her characters were originally written as “agnostic” to any disability or sexual orientation. However, when Gonzales and Klauser, both queer disabled folks, proved right for the job, their characters naturally became “queer, female-presenting” people. 


Pakman commends the Film Challenge for offering immense creative freedom to its participants and for providing performers with disabilities a gateway to an industry that often excludes them. She notes that casting directors who want to be inclusive but are unsure where to find the talent have begun to reach out to the Film Challenge as a reliable source for those seeking quality disabled creatives. 


Pakman’s commitment to disability inclusion does not end with authentic casting. She also worked diligently to create a COVID safe set, which she calls an access imperative for a community composed of many high-risk individuals. While not all disabled people are high risk, she likens her determination to be COVID conscious to “building a ramp”. Not everyone needs a ramp, but a ramp ensures everyone can participate. Similarly, her safety measures ensured that all individuals could be on her set, including those at greater risk of poor COVID outcomes, including herself. She cautions that no one should be “complacent” given the potentially devastating risk of severe symptoms or post-COVID sequelae, referred to as Long COVID.


On set precautions included the use of high-quality masks, testing, and a HEPA filter. Pakman calls these measures a “small investment” with the hugely important payoff of keeping the cast and crew safe. The COVID era has also illustrated the unique value of remote appearances, which allow film crews to work with a wider array of talent, including those who “just can’t be in your location” or have difficulty traveling. 


When pressed about the takeaway message of “Cripfished,” Pakman said she hopes moviegoers with and without disabilities will feel “pride in who they are.” She feels hopeful about the future of disability representation in the media but laments a still miniscule number of disabled folks in the writers’ room for popular movies and television shows. She is quick to emphasize that disabled folks can provide critical insight not just on disability, but on any and every topic and in any and every role. Pakman wants to see people with disabilities recognized for the full range of their human experiences and feels that “we won’t have true equality” until a disabled actor can come in and “read for any role.” Those who are skeptical should be reminded, she adds, “that people with disabilities are everywhere” and belong in every place from schools to hospitals to business offices and cashier counters. 


Audiences can “swipe right” on “Cripfished” beginning April 8 by going to the following link: https://www.youtube.com/watch?v=uMRMCKPmKPg .The film has open captions, with audio description coming soon.