Headed to Washington, D.C.!
Hair is done (by the AMAZING @trumane_hair_studio, seriously, you should have seen how crunchy it looked when I went in there 😆) so now I’m ready to head to D.C. with @bia_usa to advocate for the brain injury community by speaking with our legislators about some important initiatives we need their support on.
I’ve made my (packing) list, checked it twice, traveling while disabled is more naughty than nice! 😂 But regardless, Cazzy Claus is comin’, to toooowwwwn! Okay, obviously Christmas is my favorite holiday and bad jokes are my jam, but I’m taking this opportunity very seriously. It’s not often that you to get to be amongst this many individuals in the brain injury community, particularly while being able to speak directly to your representatives about the issues that affect us most.
I’m thinking about making a video sharing some of my trips for how I prepared for this trip in terms of packing-which is such a difficult thing to do when traveling (“What do I wear for this event?”, “What if we go out to eat afterwards?”, “What happens if it starts raining?”….“My silk press!!!”) but it’s even more difficult when you’re dealing with a brain injury or other disabilty. The cognitive load, not to mention the physical practicalities of packing and travel can be more than a challenge, so I think it would be helpful to share some of the things that make it more accessible for me.
You can head to biausa.org for more info about how you can support, even if you don’t have a brain injury yourself!💪🏽🧠
See you soon, D.C.!🎉
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©2025 Cazoshay Marie. All rights reserved. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Cazoshay Marie with appropriate and specific direction to the original content.
D.I.D. with Cazoshay and its materials are not intended to treat, diagnose, cure or prevent any disease. All material on this blog is provided for educational purposes only. Always seek the advice of your physician or another qualified healthcare provider for any questions you have regarding a medical condition, and before undertaking any diet, exercise or other health related program.
The opinions expressed on this site are that of my own and not reflective of, nor supported by, any of the organizations that I am affiliated with.
The Double Invisibility of Being Black and Disabled
Standing in the aisle of the grocery store, I feel the presence of someone approaching me, coming dangerously close to where I’m standing. Inches away. Close enough that I can feel the warmth of their body heat. I then see a hand reach over in front of me to grab an item off the shelf. After which, the hand’s owner proceeds to walk away, the entire act occurring as if I weren’t even there.
Granted, I had been standing in that spot for a while, my head feeling like it was literally spinning as I tried to both get my bearings and remember why I was standing in that aisle in the first place as the symptoms of my traumatic brain injury began to worsen.
Now normally, I am not the one nor the two. A simple “excuse me” would have let me know that the person needed to get where I was standing, and I usually have no problem letting people know that in the moment. As a person of color living with disabilities for the last seven years as a result of being struck by a car traveling 48mph while crossing the street in downtown Phoenix, I sometimes wonder in times like that why people seem to be incapable of seeing me? Both literally and philosophically. It also makes me wonder why people don’t take the time to consider that I may have been standing there for so long for a reason other than to try to annoy the general public by taking up space for an unnecessarily long duration of time, when obviously I know that grabbing a can of beans off of a shelf is a life-or-death situation that requires immediate action, to the exclusion of basic human consideration.
Living with the effects of a traumatic brain injury, chronic pain, nerve damage and vestibular issues, (all so-called “invisible disabilities” because the effects of these conditions are not always visually perceptible), already often makes me feel as if the struggles and realities of my existence are not seen or considered. Although my disabilities are “invisible”, this occurs even when my status as a disabled person is made known. Add the fact that I’m a black woman, who, statistically speaking, is a part of a demographic that often gets ignored or discredited by the medical field, sometimes I feel doubly invisible. Doubly ignored.
According to a 2021 Pew Research Study, about a third of African Americans surveyed said that their pain has not been taken seriously (35%), or that their provider has rushed them (32%). (https://www.pewresearch.org/short-reads/2023/12/21/5-facts-about-black-americans-and-health-care/)
“Black Americans are systematically undertreated for pain relative to white Americans...findings suggest that individuals with at least some medical training hold and may use false beliefs about biological differences between blacks and whites to inform medical judgments, which may contribute to racial disparities in pain assessment and treatment.” (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4843483/) If medical providers hold false beliefs about blacks, they clearly are not seeing us accurately. Our pain, experiences and symptoms become “invisible” to providers, which can cause a myriad of issues medically, psychologically and emotionally for disabled African Americans.
According to a Pew Research report, “(55%) [of African Americans surveyed said]...they’ve had at least one of six negative experiences, including having to speak up to get the proper care and being treated with less respect than other patients.” (https://www.pewresearch.org/science/2022/04/07/black-americans-views-about-health-disparities-experiences-with-health-care/) Even as it pertains to one of my primary disability, a traumatic brain injury, the assessment, and therefore the visibility, of African Americans in this demographic is not accurate according to the research. “Some studies state that following a traumatic brain injury, members of minority groups have a more difficult time than whites in finding work and returning to social activities. Other studies disagree. Some researchers suggest that evaluation tools used by clinicians are to blame for the differences in scores. They suspect that the evaluation tools may be unintentionally biased against members of minority groups because they are written for and measure traits of the White culture.” (https://www.biausa.org/professionals/research/tbi-model-systems/outcomes-for-african-americans-and-whites-similarities-and-differences)
Even when presented with statistical data corroborating the assertion that African Americans still face discrimination in many different areas, including healthcare, I’ve found that numerous non-POC friends and colleagues remain in willful and determined disbelief. They make the conscious decision to negate my experiences and the experiences of other people of color. This begs the question, what more will it take for us to be believed? For us to be “seen”?
I can’t help but draw the parallel between the experience of living as a person of color and that of living as a disabled person. Not only does one affect the other, but they both present their own unique challenges in having the community at large see us in the totality of who we are within those demographics. In America, there is the cultural belief that anyone who experiences any kind of loss, tragedy or traumatic physical or emotional event should just “pull themselves up by their bootstraps” and move on in a way that seems productive to the general population. As a disabled person, that’s just not always possible. Especially in a society that, for the most part, has been built exclusively for non-disabled individuals. Thanks to The Americans with Disabilities Act and many vocal advocates, that is slowly beginning to change. However, much of the progress that has been made is now under threat under the current administration. Our symptoms and “limitations” as disabled persons affect every aspect of our daily lives, frequently in ways that other people don’t see. Sometimes, “pulling myself up by my bootstraps” means being in bed for two days straight when an intense migraine and chronic pain make functioning impossible.
I’m not asking for sympathy. I’m not asking for pity. I don’t think most African Americans or disabled persons are. But what I am asking for from non-POCs and non-disabled individuals is to have the empathy to consider experiences other than their own. To truly “see” us, you have to take the time to get to know us. You have to take the time to educate yourself with the resources that are readily available in order to learn about what life is like for us. And please, for the love of God, remember to say “excuse me”.
Resources
https://www.pewresearch.org/science/2022/04/07/black-americans-views-about-health-disparities-experiences-with-health-care/
https://www.biausa.org/professionals/research/tbi-model-systems/outcomes-for-african-americans-and-whites-similarities-and-differences
https://www.pewresearch.org/short-reads/2023/12/21/5-facts-about-black-americans-and-health-care/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4843483/
©2025 Cazoshay Marie. All rights reserved. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Cazoshay Marie with appropriate and specific direction to the original content.
D.I.D. with Cazoshay and its materials are not intended to treat, diagnose, cure or prevent any disease. All material on this blog is provided for educational purposes only. Always seek the advice of your physician or another qualified healthcare provider for any questions you have regarding a medical condition, and before undertaking any diet, exercise or other health related program.
The opinions expressed on this site are that of my own and not reflective of, nor supported by, any of the organizations that I am affiliated with.
Two New Features!
Hey friends! I’m super excited. to share with you that I have two new features that are now live!
The first is with “BOLD Journey.” I share about my story, finding my purpose, and qualities that I think are important for all people to develop, regardless of disability status.
The second is with an organization I am proud to have worked with in the past, Concussion Awareness Now. In that feature, you can read about how I sustained my brain injury and how it catalyzed me to become the advocate that I am today.
You can click the buttons below the photos to read the features. I’d love to hear your thoughts, and please feel free to share with anyone you think may benefit from hearing my story!
XOXO,
Cazoshay
©2025 Cazoshay Marie. All rights reserved. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Cazoshay Marie with appropriate and specific direction to the original content.
D.I.D. with Cazoshay and its materials are not intended to treat, diagnose, cure or prevent any disease. All material on this blog is provided for educational purposes only. Always seek the advice of your physician or another qualified healthcare provider for any questions you have regarding a medical condition, and before undertaking any diet, exercise or other health related program.
Jazz-The Soundtrack to My Disability Life
It was a calm and temperate Phoenix night. Clear skies. Mid-May, so it wasn’t unbearably hot yet. I was walking back to my car after leaving an event at the Phoenix Science Center, cosplaying as Poison Ivy as it was a “science of superheroes”-themed event. I pushed the button to cross the street. I had the right of way. As I entered the second half of the road from the pedestrian crosswalk, suddenly, BOOM! CRASH! I was struck by a car traveling 48mph. I was thrown 15’ up and 100’ forward from where the driver hit me. I sustained multiple injuries, some of which have resulted in long-term disabilities and conditions to include a traumatic brain injury, chronic pain, nerve damage and vestibular and vision issues, just to name a few. The driver never got out of his car and left me alone, broken and bleeding on the street until a Good Samaritan who witnessed the incident came to help me.
Jazz has become the soundtrack of my disabilities. There’s a song or artist for every mood, every experience, every setback and every triumph that I’ve been forced to contend with in the almost eight years since the traumatic accident occurred. I’ve always loved the motto, “life is a movie, starring you,” and if I were to choose the genre that best encapsulates and expresses my experiences since becoming disabled, it would be jazz.
Jazz is a difficult genre to clearly define because it encompasses a wide range of music spanning time, culture and region. According to Wikipedia, “Jazz is a music genre that originated in the African-American communities of New Orleans, Louisiana, in the late 19th and early 20th centuries, with its roots in blues, ragtime, European harmony and African rhythmic rituals.” (https://en.wikipedia.org/wiki/Jazz)
Artists such as Duke Ellington, Miles Davis and John Coltrane are familiar favorites of the musical style. Although often a male-dominated genre, the contributions of female jazz artists such as Ella Fitzgerald, Billie Holiday and Sarah Vaughn should not be overlooked; their influence on modern-day artists such as Diana Krall and Melody Gardot is apparent.
Jazz is a style of music that is rooted in improvisation. Performers may change melodies, harmonies or compositions depending on mood, audience participation and the general vibe in the room. Notes and melodies may change at a moment's notice, you never know what to expect and may never get the same live musical experience twice.
As a disabled person, I am no stranger to improvisation. The contemplative mood of Blue Mitchell’s song, “It Could Happen to You”, aptly named, melodically expresses the way that I constantly have to think of ways to adjust. The symptoms of my disabilities affect every aspect of my daily life, from self care to parenting and everything in between. Prior to the accident, I was an independent wellness instructor and single mom with a vibrant social life. Becoming disabled changed all of that, and I had to learn how to improvise to accommodate the effects of my disabilities. I constantly have to think on my feet and play it by ear just to make it through the day, a direct parallel to the way that jazz music encompasses improvisation.
I would be lying if I said that the question, “why me?” did not come to mind at times, especially in the early days of recovering from the accident. Every time I went to the doctor, it was more bad news: another diagnosis, another medical professional informing me of the negative long-term effects that I would be experiencing as a result of my disabilities and conditions. Interaction and collaboration are two key elements of jazz music.
Artists have an almost supernatural connection to both the music, and each other that creates beautiful pieces of instrumental art. Songs such as, “Have a Talk with God” by Henrik Gunde, Nicolas Kock and Karsten Bagge are excellent examples of several artists coming together to create something greater than what could be accomplished alone. Throughout my journey with disability, I have had to learn to lean on others for help. As a highly independent person, this was extremely difficult for me. But like the collaborations and interactions found in jazz music, once I learned to collaborate and interact with others for my well-being (primarily my immediate family), it created this beautiful mosaic of my current existence that’s greater than what I would have been able to accomplish on my own.
Because I finally learned to collaborate with others for assistance, I have been able to become a speaker and advocate, championing the issues that affect disabled persons, particularly those in the brain injury community. I collaborate with other survivor-advocates as a member of The Brain Injury Association of America’s Advisory Council. This would not have been possible unless I had taken a lesson from jazz music and learned to interact and collaborate, to lean on even, the people who are close to me in order to help me not only survive, but thrive despite my conditions.
And on that note (pun intended), It’s not all bad. Becoming disabled has shown me that I possess a strength and resilience that I didn’t know I had. The smooth, persistent melodies of “The Feeling of Jazz” by Duke Ellington and John Coltrane remind me of the fact that no matter what I’m facing-having to advocate for myself with doctors, dealing with the ableist misconceptions of others, debilitating pain, an uncertain future, I just keep on trucking. But unlike “The Little Engine That Could”, repeating “I think I can, I think I can,” my mantra has become, “I know I can, I know I can.” This song’s lilting cadence conjures up visions of me continuing to walk forward on this unchosen and unexpected path that I am now on with my disabilities and conditions.
At the 1976 Grammy Awards, Mel Torme asks “The Queen of Jazz”, Ella Fitzgerald, how she would explain what jazz music is to people. She replies that she thinks they can show them, and they go into a captivating scat performance, going back and forth, improvising notes and melodies, showcasing a beautiful explanation for something that is frequently considered to be undefinable. (view that performance here: https://www.dailymotion.com/video/x23t25p) That’s how I feel when I’m trying to explain what my life is like now that I’m disabled. There’s complications, back and forth momentum, highs and lows, joy, hidden pain even; but it all comes together beautifully to create the soundtrack of my life.
This journey began with a BOOM and a CRASH, like what we experience in the latter portion of Miles Davis’ “Nefertiti” after a mesmerizing, trance-like and consistent repetition of the melody in the first half of the song. The seeming dissonance that ensues is actually more of a controlled free-fall, which is exactly what my life as a disabled person has felt like. At times I may be “In A Sentimental Mood” (Thank you, Mr. Duke Ellington), but honestly, I wouldn’t trade this iconic symphony of a life with disabilities for the world. It’s been in this improvised, “take it as it comes and create something magical” experience that I’ve discovered a more marvelous version of myself. A version that’s allowing me to create something bigger than myself. If that’s not jazzy, then I don’t know what is.
©2025 Cazoshay Marie. All rights reserved. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Cazoshay Marie with appropriate and specific direction to the original content.
D.I.D. with Cazoshay and its materials are not intended to treat, diagnose, cure or prevent any disease. All material on this blog is provided for educational purposes only. Always seek the advice of your physician or another qualified healthcare provider for any questions you have regarding a medical condition, and before undertaking any diet, exercise or other health related program.
Join Me at The Brain Injury Association of America's National Brain Injury Conference and Awareness Day!
From the Brain Injury Association of America:
“The National Brain Injury Conference and Awareness Day is less than two months away, and we’re excited to see familiar faces as well as newcomers to the event, like Cazoshay Marie.
Cazoshay is joining us this year because she recognizes how important it is for legislators to hear directly from brain injury survivors about the issues that matter to the brain injury community.
In addition to our annual trip to Capitol Hill, where attendees will have the opportunity to meet with their congressional representatives and advocate for brain injury causes, this year’s event will include a conference for brain injury survivors and caregivers, featuring educational breakouts, social events, and more. You can view the full conference agenda here.
Whether you’re an Awareness Day veteran, or a first-time attendee like Cazoshay, we can’t wait to see you on March 3-5 in Washington, D.C.”
©2025 Cazoshay Marie. All rights reserved. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Cazoshay Marie with appropriate and specific direction to the original content.
D.I.D. with Cazoshay and its materials are not intended to treat, diagnose, cure or prevent any disease. All material on this blog is provided for educational purposes only. Always seek the advice of your physician or another qualified healthcare provider for any questions you have regarding a medical condition, and before undertaking any diet, exercise or other health related program.
Disability, But Make It Fashion
The holidays are upon us, so now is the perfect time to share about four of the top trends of the season, from the perspective of a fabulous fashion-loving brain injury baddie living with disabilities (moi!)
Having disabilities doesn’t mean that you can’t enjoy fashion. In fact, it’s a way to express yourself to the world when you are often stereotyped, or assumptions are made about you as a disabled individual. Making fashion accessible may not be as difficult as you think, so here are four top trends of the season and how to make them more accessible if you have a brain injury.
Note: I read somewhere that we have enough clothing in existence right now to clothe the next seven generations of people. If you don’t already have something from these trends, I encourage you to try to find pieces secondhand. Good for the environment, your bank account, and who doesn’t love the thrill of the hunt???
Faux Fur
As someone born and raised in Alaska, faux or vintage furs make an appearance every winter-even if now that I live in Arizona. This time of year I can wear them in the morning but by the afternoon I am being roasted alive. Faux or vintage furs elevate casual outfits like sweats, which are often more comfortable when you’re living with a disability.
Burgundy
Red became a go-to shade for Fall, and now that the holidays are upon us, burgundy is making a big statement, especially with monochromatic outfits. Wearing a solid color from head to toe not only looks super chic, it also makes dressing easy when you have a brain injury-no need to try to match pieces, they’re all the same color!
Leopard Print
leopard print jumped off in the Fall and is still going strong. I’ve always considered it a neutral and therefore appropriate for any time of year, but that’s just me. You can just do a single piece or an accessory (like a handbag) if patterns aggravate your sensory sensitivities.
Statement Pieces
Try easy-to-put-on jewelry like a string(s) of pearls (faux is fine!) or clip on statement earrings that don’t require a lot of dexterity or hand-eye coordination, which can aggravate your brain injury symptoms.
Big Bags
I have to be careful with this one as I have chronic pain so if the bag is too heavy, it’s painful for me to lug it around. But having the ability to have everything you need with you at all times as a disabled person: medication, ear plugs, sunglasses, snacks, etc. and you just happen to be on trend for the season? That’s a win-win!
Are you looking forward to the chic, glitz, glam of holiday fashion? Which trend do you want to try this year?
©2024 Cazoshay Marie. All rights reserved. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Cazoshay Marie with appropriate and specific direction to the original content.
D.I.D. with Cazoshay and its materials are not intended to treat, diagnose, cure or prevent any disease. All material on this blog is provided for educational purposes only. Always seek the advice of your physician or another qualified healthcare provider for any questions you have regarding a medical condition, and before undertaking any diet, exercise or other health related program.
Navigating the Holidays as A Parent Living with Brain Injury Webinar
Managing children's expectations, preparing meals, dealing with symptom flare-ups & sensory overload...there can be a lot to try to handle during the holidays as a parent living with brain injury. Resilient Roots creator & moderator Cazoshay Marie discusses these topics and more, as well as provides some suggestions for how to make your holidays more manageable & full of joy!
There will be no December meeting of Resilient Roots (enjoy the holidays!) Our next meeting is January 16th with guest speaker Taryn Barlow of The Well Brain!
©2024 Cazoshay Marie. All rights reserved. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Cazoshay Marie with appropriate and specific direction to the original content.
D.I.D. with Cazoshay and its materials are not intended to treat, diagnose, cure or prevent any disease. All material on this blog is provided for educational purposes only. Always seek the advice of your physician or another qualified healthcare provider for any questions you have regarding a medical condition, and before undertaking any diet, exercise or other health related program.
5 Things Accessibility Should Always Be
As a person living with disability, accessibility is always at the forefront of my mind. Not just considering my own disabilities, but also the disabilities of other individuals as well. I can’t help but look at the world through new eyes since being struck by a car traveling 48mph while crossing the street in downtown Phoenix in 2017. I look at sidewalks and entrances, signs and noise levels. I take it all in and quite honestly, it makes me sad that many people are excluded from being able to fully participate in the world. I’m one of those people and I am not alone. In the United States alone, 1 in 4 persons is living with at least one disability (I’ve got a few-good times!😂)
I’ve created a list of five things that accessibility should always be, and I hope that we (globally) move in this direction.
ACCESSIBILITY SHOULD BE…
A Consideration at the Onset
During my speaking engagement at the National Space Society’s International Space Development Conference, I spoke about making space settlements accessible for all citizens. Space settlements are an opportunity for us to create environments that are accessible for everyone at the onset, during their creation, which is much easier than trying to retrofit and work backwards to make things work for all individuals. The same should apply to Earth. Just like other marginalized voices, disabled persons should be a part of the conversations at the beginning, rather than making us have to raise a stink about it after the fact. 😜 I did an additional talk about Disabilities as Superpowers. Disabled persons are creative, our disabilities can offer unique strengths, and even advantages. Why not use that as a resource at the onset in planning and implantation across all sectors?
Inclusive of All Peoples
Deaf, blind, black, jewish, indigenous, asian, queer, religious, wheelchair-bound, brain injury, psychological, neurodivergent, limb difference…it may seem impossible to try to accommodate everyone & their various experiences as disabled persons…but that doesn’t mean we can’t try! In the words of Dr. Seuss, “a person’s a person, no matter how small.” No one should bet left out. An important thing to keep in mind is that when you create accessibility for one group, it often benefits several others, even those without disabilities! For instance, with brain injury, we experience visual disturbances, balance issues, sensory sensitivities, and more. Visual disturbance accommodations for brain injury survivors also help those who have low vision. Accommodations for our balance issues can benefit those who use wheelchairs or have limb differences. Accessibility considerations for our sensory sensitivities can benefit those who are neurodivergent. (As a brain injury survivor, I love a good “Quiet Room”!)
*Note: I don’t really care for the word “accommodations” because if we had been considered in the first place, we wouldn’t have to be “accommodated” after the fact. 🤷🏽♀️ “Accommodations” can imply that it’s special treatment when what we’re asking for is actually just equal treatment.
Accepted by All
In order for accessibility to really work, everyone has to be on board with it. That is why if you are someone who is not living with a disability, it’s important to avail yourself of the numerous resources that are available in order to help you better understand the disability experience and how to be an effective ally. We can’t do it alone, so we need our non-disabled brothers and sisters to get on board with making sure everyone is considered.
Not Made the Responsibility of Disabled Persons
Disabled persons should not have to bear the weight of fighting for an accessible world by themselves. We are tired, y’all. Even those of us who are advocates get frustrated at the lack of empathy and having to try to convince everyone that we deserve to be considered and to have the same rights and to be able to enjoy life the same way that people without disabilities do. We need your help.
Not Taken Personally
Rights are not pie. Giving rights and considerations to somebody else doesn’t mean less for you. There’s enough accessibility pie to go around for everyone, trust me. Disabled persons asking for things to be made accessible is not a personal attack against you, and should never be taken as such. (That’s not an excuse for people to be rude to you though, disabled or not.) You may not always get it right. Even as a disabled person myself, I certainly don’t, but if you do get corrected, don’t take it personally. My mom recently helped me reframe this situation as being a positive because in being corrected, you gave someone the opportunity to find and use their voice, and especially for disabled persons who are often marginalized, that is so important. So don’t take the fight for accessibility personally, pull up your sleeves and come alongside us, babe. We need you.
Join us for the next virtual meeting of Resilient Roots Support Group for Parents Living with Brain Injury!
©2024 Cazoshay Marie. All rights reserved. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Cazoshay Marie with appropriate and specific direction to the original content.
D.I.D. with Cazoshay and its materials are not intended to treat, diagnose, cure or prevent any disease. All material on this blog is provided for educational purposes only. Always seek the advice of your physician or another qualified healthcare provider for any questions you have regarding a medical condition, and before undertaking any diet, exercise or other health related program.