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Corpus Callosum Disorders; a microcosm of the disability community | Michael Shanahan | TEDxQUT
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- เผยแพร่เมื่อ 17 พ.ย. 2021
- Rare condition communities are united in their struggle for recognition in the health care community. The neurodiversity movement calls for inclusivity through environmental and social change.
Michael is a Master of Philosophy student researching anxiety in Corpus Callosum Disorders and is the Vice President of AusDoCC (Australian Disorders of the Corpus Callosum). As someone who experiences Corpus Callosum Disorder, he has a unique perspective as a healthcare practitioner, consumer, advocate and researcher. Michael is a Master of Philosophy student at QUT researching anxiety in Corpus Callosum Disorders and is the Vice President of AusDoCC (Australian Disorders of the Corpus Callosum). He is a Registered Nurse with a Master of Nursing and has a unique perspective as a healthcare practitioner, consumer, advocate and researcher.
A someone with a Corpus Callosum Disorder, Michael sees the challenges in accessing healthcare and participating fully in society for the Corpus Callosum Disorder community and the disabled community at large. This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at www.ted.com/tedx
Fantastic talk. You have just taken CCDs a major step closer to the understanding and inclusion that is so desperately needed. ‘Nothing about us without us’ extends to this community.
To anyone with a CCD, you do not need society to accept you for who you are in order to be okay with who you are.
You do deserve to have your needs be known to the public so that you can feel safe being different among people who can’t tell you’re different. And until a person has awareness of what a CCD can feel like, they won’t understand how terrifying it can be to deal with life with a very invisible CCD causing you to be treated differently. Peace and Love
I’ve been living with this disability for years and I’ve learned to deal with it
Am un băiețel cu acesta afecțiune îmi puteți da mai multe detalii
Mulțumesc mult
@@CostyAndrei-jb7fr I’m 45 years old, and I just found out I don’t have a corpus callosum. I struggled in school. The times I had tutoring I did well, so I will stress that it would have been awesome to have consistent tutoring throughout school. I also did my best in school when I used a speed reading program called eyeQ, and was able to read one thousand words a minute. I used to look in the mirror in tears wondering why I can’t learn like everyone else. I was stubborn about taking harder classes so to prove I could do it and be like everyone else, but didn’t end well when I did that. My close friend was a valedictorian, and I barely just graduated. It can be a struggle to learn but once I have the information it’s sticks. As a teenager I was socially awkward. My communication skills were horrible. I started the Martial Arts and that was my career for 20 years. I had about 180 students running my own business. Working 15 hours a week making about eighty thousand a year. I got burnt out and was ready for a career change. During Covid I went back to school and got an AA degree. I actually was able to get something signed from the college counselor that said I don’t have to take math. Instead I was able to complete those units with whatever classes I wanted. I got an AA in graphic design and now I work at a highly reputable company as a production artist.
My five year old grandson has corpus callosum, up to this point he is developing as a perfectly normal youngster, active intelligent and healthy in all respects. All cases are not the same but so far so good.
I’m 45 years old and because of a car accident I had to get an MRI. I found out I don’t have a corpus callosum. I used to wonder why I can’t learn like everyone else.
1)I struggled in school but when I had tutoring I did well. Too many teachers teach assuming you know last years basics so it’s a struggle when their is no review.
2) I had horrible social skills. I took the martial arts starting in high school. I ended up teaching for 20 years running my own program. My mindset was always proving to myself I’m like everyone else. This drove me to not give up until I accomplished the task.
3) during Covid I went back to school. I got an AA in Graphic design and work as a production artist. It’s awesome. When I went back to school I was able to get a paper signed the counselor gave me so I didn’t have to take math.
Finally, I have closure knowing what my actual issue has always been. God bless!!!
You're not alone,same thing happen to me,I struggled a little in school,I had headaches and insomnia. I didn't know what was going on,thru life I still had headaches and insomnia. I was referred to a Neurologist by my Aunt. He found out I have cc'd and a hole in my heart also. I guess they are congenital. So we need doctors to help adults,that have been diagnosed late in age
My daughter has complete acc and is 19, she is a wonderful person, talented, and beautiful, with a little different view of the world, and a lot of love for everyone. She may need more help with skills like driving, and getting a traditional job, but she is a light in the world.
Apka mob. No. Milega
If you're at all interested in connecting, I'd love to talk with you! My dtr sounds very similar to yours!
Thank you Michael for having such a wonderful talk about disorders of the corpus callosum!
This is wonderful. Thank you so much
Great presentation
Thank you for bringing up the challenges new parents face trying to find any good information about the diagnosis. I was so thankful when I finally found the support groups on fb and was able to learn and get support from those going through this. I found them on my own after a lot of stressful months though. We need doctors to be better informed about where people can go to get information at least, since they cannot know everything themselves. Thank you for advocating for inclusiveness as well 💜
I agree with you Brandi, I have had a similar experience. While I understand doctors don’t know everything and don’t have all the answers, I feel like no hope is communicated and then no resources on top of it - which is a huge issue. I’m also thankful for some FB groups and videos like this! 🤍
Can you please share the names of the FB groups? My daughter is newborn and waiting to get MRI to diagnose.
This was a great intro to the subject. My daughter had a thin corpus callosum. She's a wonderful little girl and I love her differences. I hope she can be an advocate in her adulthood like you.
Mam same problem with my daughter also and she is 6 month if don't mind can you share treatment of this ill.
My daughter is the same. You stated “had”. Did anything change?
@@arunrahangdale1031how is your baby currently please tell me my baby is same problem
My son same issue
@@Pakistan-c70did he have any developmental issues? Is he/was he able to crawl and walk?
Dankjewel! Voor het delen
Beautiful speech! ❤
Thank you. I have been researching CCD for the last 15 years since my daughter was diagnosed in utero. We are now in the teen years and finding services to assist her is very difficult.
Hi Kelly, the teen years can be especially difficult, there is a much smaller focus on this stage, in comparison to early life for people with CCD, this is slowly changing with more recognition but there is still a long way to go.
Does anyone have any information on this guy? My 7 year old son has this condition and I'm always looking to learn more about it
Hi Kenneth, I think TH-cam deleted my previous reply... you can reach me and find more information about me and what I do through my TH-cam channel
I actually have had the pleasure of working professionally with him. What did you want to know? Would you like me to drop a line? I could still get in touch if needed.
I found out my two year old son has it as well he also has auts2