May 1, 2019 at 1:12 pm #16868
Lately, I have noticed that there are more campaigns that are showing off people with all different abilities, scars, and sizes and I think it’s a great movement. I know that there is a girl who has been featured in some Aerie (a brand by American Eagle) photo-shoots with a scar from open heart surgery.
When I was growing up, I never saw people in magazines or on TV shows with scars like mine. Until I got older and started using social media to connect with people with similar conditions, I didn’t have many people to personally connect with.
There have also been movies that have been bringing more awareness to rare diseases and illness in general. To name a few that I have seen with characters that represent the chronic illness and disease community: The Fault In Our Stars (she has oxygen), Five Feet Apart (raising awareness for Cystic Fibrosis), A Walk To Remember (her diagnosis is Leukemia), and recently there is a sci fi show with a heart transplant recipient called Chambers.
Have you noticed people with different abilities and those with chronic illness getting representation in social media, movie roles, magazines, etc? What are some movies or shows that you have watched that you felt like you could relate to the characters because of their illness or their attitude towards that particular illness? What ways can we push to be represented more in the media?
May 1, 2019 at 9:03 pm #16875
I agree, Brittany!
I’ve definitely seen more people with disabilities as well with illnesses in TV ads as well as movies. I watched some documentaries that I have come across on Amazon Prime, too! A few were on MS ( Multiple Sclerosis) snd Alzheimer’s.
I also have noticed more TV shows that feature more illnesses and more medical based television shows in general. I enjoy watching The Resident every week and I cannot recall the one before but the teens/ young adults had cancer and it was based on their lives in the hospital and their struggles. It was something like The Fault In Our Stars but weekly. I haven’t seen 5 Feet Apart Yet, but want to , as well. I did watch A Walk To Remember. I enjoy those shows and movies , as often we can relate to most, but also do not like to overdo it and watch too many at once or I’ll be in tears, lol
I think overall it’s great and definitely want this to continue so others can see how these illnesses and disabilities affect people in their daily lives! I’ve contacted several talk shows during PH Awareness months and not replies , except a local Houston based show which did a small segment, sadly I wasn’t able to attend but several PH did and that’s awesome! I’ve also reached out to newspapers and one year a local newspaper posted my article for PH Awareness! Every little thing we can do to keep this going is always a positive!
May 2, 2019 at 9:59 am #16878
Even though it stinks to not get replies back from places, sometimes it only takes that ONE to make a huge difference and I’m sure those that read your article were greatly impacted by it. It’s all about realizing the ones that you DO have an impact on. I tend to sometimes focus on the amount of views that some of my columns have received. The ones with fewer views get me discouraged, but then I get some messages from readers of these with fewer views and see that it HELPED some people out there. THAT is what truly makes it all worth it. So any impact is a big impact in my opinion and I think you are doing an excellent job with raising awareness and advocating for this community. THANK YOU!
May 2, 2019 at 5:44 pm #16895
Thanks fir your kind words, Brittany!
I definitely agree that I’m not stopping because of no replies. I’m with you , if even one person is helped or impacted by my writings, etc., that’s a plus!
You do an awesome job with your writing and sharing your story as well as helping others! I’m sure you’ve had a huge impact on more than you could even imagine! Keep it up!
May 2, 2019 at 6:49 pm #16906
Thank you, Jen!!!! Your encouragement really does mean so much to me and people like you are why I go to bed with a smile on my face and feeling like I have purpose. There was a time in my life not too long ago where I really struggled with this and was just “going through the motions”. That was such a terrible feeling. But I’m lucky to find joy in what I’m doing.
May 2, 2019 at 7:06 pm #16916
You definitely should go to bed with a huge smile on your face every night! You are definitely an inspiration and no matter what you’re going through, you’re always willing to share and help others! You share so much that help others , including myself, to open up more and discuss the tough issues we often hide! Talking about these tough topics help in so many ways!
I want to grow up and be just like you, lol 😂
May 2, 2019 at 7:08 pm #16918
LOL!!!! Thank you, Jen!!! You’re the best!
May 2, 2019 at 9:43 pm #16927Jimi McintoshParticipant
I am happy to see more infomercials
Depicting people with disabilities. I keep looking for those depicting people with hidden or invisible disabilities. I wish the airlines were more considerate, allowing us wider seats near the bulk heads , more training for TSA, whereas they either pat you down or pass thru the scanner, not both.
Our society has a long ways to go in educating people and employers that
Disabled people are worthy of hiring,
Because we are productive and not just a tax break for hiring us. So many pass us by, and use lame excuses. I really want to scream every time, someone says “ you do not look disabled”.
The more people are exposed to people with disabilities, the better it will be for everyone.
May 3, 2019 at 9:00 am #16934
So true Jimi,
and you are right about educating those involved in TSA and travel about disabilities and the reality of an “invisible illness” . Sometimes I find myself educating others in difficult situations that they have put me in. For example, when people have commented or glared in my direction (when I look able) and there is an older person standing up next to me waiting for a seat. In reality, I also need the seat because I cannot stand for that long. People just see what is on the outside unfortunately and it usually takes someone ignorant to go through something life changing in order to change their perspective on this. More education, awareness, and more people speaking up can make a difference.
May 3, 2019 at 1:36 pm #16936
I agree we definitely need more education and the TSA agents is a good sea! I think that as Brittany says, I’ve educated people myself. Several years ago, on a flight, it was a TSA agent and also a Flight Attendant. They had no clue on what my Portable Oxygen Concentrator ( POC ) was, as they both guessed it was a CPAP . I take these times to educate about PH , too!
Hostess and Host at restaurants are another as when we go eat my family will say , “ something close “ and they drag us all through the place and to almost through the back door before we get a table. Often, my Hubby or Daughter will grab them and ask if another closer table is available. If it’s a huge place , we often use my wheelchair and if it’s a pretty good day, I’ll just walk ( as I use my O2) to the table and deal with it!on a survey once, I mentioned that and the Manager actually called and apologized and said they need to educate their staff more and he thanked me for bringing this to his attention.
I think the media has shown great improvement with acknowledging those with disabilities, I think we have to continue this education so it’s even more prevalent.
June 16, 2019 at 11:42 am #17884
I just have to add , I FINALLY watched Five Feet Apart, and of course, I cried throughout the movie! It definitely helps with spreading awareness, although I know it was about Cystic Fibrosis.
It was so crazy as my hubby kept mentioning how much he sees in Stella that reminds him of me and the things that we do. She was somewhat OCD, as he always says I am and so hopeful and positive (most days).
I thought it was a great movie, although sad and my heart kept breaking. I am glad to see more awareness, in general to disabilities and illnesses.
June 17, 2019 at 7:53 am #17894
This movie just seriously broke my heart in two ! I loved all of it and really could relate a lot to both characters. There have been times living with so much chronic illness that I had more of the morbid and dark sense of humor that he did in the movie and just an overall lack of trust in life in general. Most of my personality though is a lot like Stella in her taking it day by day, trying to do what is best (but rebelling at times when it feels appropriate)… I was SO nervous for that scene on the lake ! I’m sure you know what I’m referring to but I don’t want to ruin the movie and have spoilers for those that still want to see it hahahaha! I know how some people (including myself) get when it comes to wrecking movies. It definitely brought so much awareness. Now, when I wear my oxygen in public people assume CF because of the movie and me being so young. Better than getting comments about “this is why we don’t smoke” !
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