This is such an excellent post, Jackie. You brought me right back to the telethon days and while I wasn’t at all cognizant of the problems with the ways they portrayed disability, my memory of it all is exactly how you described it here. I wish it felt like things were way different now, and while in some ways they are, there’s still so much lack of agency and dignity given to the disabled. Thank you for your honest take here and for shining a light on this.
I’m sorry that you only focused on the sad stories that were portrayed on the Telethons. There were many uplifting stories as well. There also were very few if any agencies that someone with a neuromuscular disorder could get assistance with the costs associated with durable equipment. I could be wrong in saying this but I’m not personally aware of anyone seeking help during those years for durable medical equipment had to pay a single penny if it was done through the MDA for a disorder covered under the Neuromuscular disease umbrella. They also provided special camps free of charge for younger people to attend. There were also small local offices that catered to the needs of people in their area. All these offices also provided jobs for people with neuromuscular diseases that were qualified to do them. Also never paid a penny for regular visits to the Muscular Dystrophy clinics in hospitals on a regular basis. All funded by MDA. I can go on and on about all the things that the “Telethon” made possible. I do however agree with what you explained about using “Pity” the raise money but sometimes that’s what’s necessary to bring about the change that you are looking for. The general public doesn’t know nor care about Neuromuscular diseases unless you hit them in the face with something like the MDA Telethon. A show the entire family can watch and enjoy for the entertainment and information that it provided. Everyone is entitled to their own opinion on things, but I’m sad to think that all you remember from the telethon were the pity stories. Personally I don’t see them as pity stories, I saw them as stories of tremendous strength against impossible odds for both the families and children afflicted with these diseases. I’m a 68 year old man that has lived with Limb Girdle muscular dystrophy my entire life and I try to focus on the positives as much as possible. Do I get angry when I go someplace and there is no reasonable accessibility for me? ABSOLUTELY. But then I have to calm down and ask myself some important questions about the various possibilities. Things like how easy or difficult would it be for the business to provide a more accessible entry. Sometimes it would be a relatively easy fix, but other times I would imagine a very costly fix. Most small businesses are family owned and don’t have as much money at the end of the day as you would think, so to put an expensive ramp or other means to get people like me into their establishment wouldn’t be practical. It has nothing to do with my being disabled, it has everything to do with what they can afford to do. After all they my even have a disabled child or relatives at home 🤷♂️. Wow that was quite the run on sentence plus my grammar and punctuation is all over the place 😂. Maybe you can help me with that. I love reading your stories and usually don’t comment much, but this one kinda hit a nerve with me as someone that grew up watching that telethon my entire life. It never made me feel inadequate, it actually made me feel the opposite knowing and seeing that there were so many others like me out there and the whole world was opening its arms and pocketbooks to help. ❤️
I very much appreciate your feedback. I fully agree you have to start somewhere. Having people with disabilities on tv is important. My point with this post wasn’t to bash MDA in any way either. I went to their clinics for years and they’ve given me countless tools and help. I wish I had gone to the camps if I had the chance too (I don’t think they were around yet). I just wanted to share an alternative viewpoint of the telethons themselves that I hadn’t thought of before. I admitted I didn’t know the full scope of all the telethons did either. I’m really glad the telethons made you feel seen. I watched them so long ago that I can’t remember how they made me feel anymore so I was asking the question of myself if maybe the “pity” portrayal part affected me. I think it’s always good to have these discussions and there are many things I don’t know and am always willing to learn. I always appreciate you reading 😊
You are a badass, Jackie. Never forget that for a second. xo
❤️
This is such an excellent post, Jackie. You brought me right back to the telethon days and while I wasn’t at all cognizant of the problems with the ways they portrayed disability, my memory of it all is exactly how you described it here. I wish it felt like things were way different now, and while in some ways they are, there’s still so much lack of agency and dignity given to the disabled. Thank you for your honest take here and for shining a light on this.
Thank you as always for reading and commenting!
I’m sorry that you only focused on the sad stories that were portrayed on the Telethons. There were many uplifting stories as well. There also were very few if any agencies that someone with a neuromuscular disorder could get assistance with the costs associated with durable equipment. I could be wrong in saying this but I’m not personally aware of anyone seeking help during those years for durable medical equipment had to pay a single penny if it was done through the MDA for a disorder covered under the Neuromuscular disease umbrella. They also provided special camps free of charge for younger people to attend. There were also small local offices that catered to the needs of people in their area. All these offices also provided jobs for people with neuromuscular diseases that were qualified to do them. Also never paid a penny for regular visits to the Muscular Dystrophy clinics in hospitals on a regular basis. All funded by MDA. I can go on and on about all the things that the “Telethon” made possible. I do however agree with what you explained about using “Pity” the raise money but sometimes that’s what’s necessary to bring about the change that you are looking for. The general public doesn’t know nor care about Neuromuscular diseases unless you hit them in the face with something like the MDA Telethon. A show the entire family can watch and enjoy for the entertainment and information that it provided. Everyone is entitled to their own opinion on things, but I’m sad to think that all you remember from the telethon were the pity stories. Personally I don’t see them as pity stories, I saw them as stories of tremendous strength against impossible odds for both the families and children afflicted with these diseases. I’m a 68 year old man that has lived with Limb Girdle muscular dystrophy my entire life and I try to focus on the positives as much as possible. Do I get angry when I go someplace and there is no reasonable accessibility for me? ABSOLUTELY. But then I have to calm down and ask myself some important questions about the various possibilities. Things like how easy or difficult would it be for the business to provide a more accessible entry. Sometimes it would be a relatively easy fix, but other times I would imagine a very costly fix. Most small businesses are family owned and don’t have as much money at the end of the day as you would think, so to put an expensive ramp or other means to get people like me into their establishment wouldn’t be practical. It has nothing to do with my being disabled, it has everything to do with what they can afford to do. After all they my even have a disabled child or relatives at home 🤷♂️. Wow that was quite the run on sentence plus my grammar and punctuation is all over the place 😂. Maybe you can help me with that. I love reading your stories and usually don’t comment much, but this one kinda hit a nerve with me as someone that grew up watching that telethon my entire life. It never made me feel inadequate, it actually made me feel the opposite knowing and seeing that there were so many others like me out there and the whole world was opening its arms and pocketbooks to help. ❤️
I very much appreciate your feedback. I fully agree you have to start somewhere. Having people with disabilities on tv is important. My point with this post wasn’t to bash MDA in any way either. I went to their clinics for years and they’ve given me countless tools and help. I wish I had gone to the camps if I had the chance too (I don’t think they were around yet). I just wanted to share an alternative viewpoint of the telethons themselves that I hadn’t thought of before. I admitted I didn’t know the full scope of all the telethons did either. I’m really glad the telethons made you feel seen. I watched them so long ago that I can’t remember how they made me feel anymore so I was asking the question of myself if maybe the “pity” portrayal part affected me. I think it’s always good to have these discussions and there are many things I don’t know and am always willing to learn. I always appreciate you reading 😊
I'll be watching Change, Not Charity ASAP. Thanks for sharing this, Jackie!