My name is Adam, I am 17 years old and I live in Sweden.
I have no idea which grade of PFFD ive got, im 100% sure that I have it
I have no kneecaps and my thigh bone is EXTREMELY short compared to the 'norm', and was also born with absolutely NO arms at all.
I dont see myself as disabled, i just concider myself as armless and funky legged
I like to quote Spider-Man by saying "this is my blessing, this is my curse", I really think that it is true aswell! My life has been a true struggle. I've tried to commit suicide weekly from the age of 11 'til 16.
My childhood was like any others, I went to the same school as my three years older brother. My mum saw no reason for me to go to a special school; why would he, the only thing thats special is his warmthy smile. My mum always used to tell me.
Now at the age of 17 I am going to a upper secondary school with 1800~ students, playing bass in a metal band and doing just fine with.
Ive got so much that I want to say and/or explain to the world, so for now I'll stop writing
More to come!
// Adam "Laser-Drake"
Comments
Teen Years
The teen years are the worst for most people with or without a disability. You may want to read some of my posts about my teen years. I was born with pffd and short arms without elbows or hands. (I have photos at my blog.) Also you might be surprised at the number of teens (especially boys) with suicidal thoughts at points during the teen years. I would strongly suggest getting involved in a support group or group therapy, if you have these thoughts return. A group can really challenge our faulty ideas and help us see the reality.
I had a lot of false perceptions in my teen years and assumed I was SO different than my friends and I worried a lot about dating and the future in general......then I figured out that I was stressing about the same things my friend were, but for different reasons and compared to the junk in their minds, I was well-adjusted!
Feel free to email me anytime.
OMG
I feel so mistreated, you seem to have ALOT of prejudices to begin with.
This site has brought me pain.
I bid you farewell. You are NOT human, you are "disabled". now leave me be.
Thanks for sharing
Hi Adam,
Thank you so much for sharing. It's true that suicide thoughts are common among teens...and even more so among teens that have disabilities. I also agree that it would be beneficial to join a group support group. As a boy...really a man, who has had these thoughts and desires, you could be very helpful to those going through the depression now...plus, you would probably gain insight of your own. Your are growing into a man that can really give back to society because of your experience both good and difficult.
You are not disabled at all. My daughter (even at only3 yrs. old) shows me everyday that she's not disabled. I mean, really you and her...everyone w/pffd and other limb issues...you guys show us "all bits" people that you do MORE. You are in a band...playing the bass...with no arms. Ok...I can't and I have arms & legs and some (a little) bit of musical talent!! You are showing people that it's not about what you don't have...it's about what you do with what you DO have.
I hated the teenage years (and I had good friends and all that)...but, most teens feel that insecurity (and the ones who don't are probably lying). I'm so glad any attempts at suicide didn't work out for you...you have a purpose here on Earth. Being out there and playing your music is an inspiration to all people who see you. (Didn't Peter's Uncle say something about it being a responsibility, too??!!)
Good luck and keep sharing!
Libbi
"not disabled at all"
I know Libbi means well with her comment that "You are not disabled at all. My daughter (even at only3 yrs. old) shows me everyday that she's not disabled. I mean, really you and her...everyone w/pffd and other limb issues...you guys show us "all bits" people that you do MORE. "
BUT there is NOTHING wrong with BEING DISABLED. We need to change the sterotypes, not the label on people who do not meet the sterotypes.
I am proud to have a disability. It gives me focus. It gives me opportunities, especially since people remember me. It gives me insights into people, and I am not missing anything because of my disability. It is part of who I am. I occassionally miss opportunities due to people's sterotypes, but NOT my disability. For example, my husband and I could not adopt stateside because of the sterotype that there are not good disabled moms. I already had two children by birth and there are many disabled parents so my disability did not stop me; it was other's misguided beliefs about disability.
Adam...I encourage you to fight the urge to say "I am not like disabled people" because you are not like the sterotypes. No one is like the sterotypes. Being disabled, is NOT a limitation, but rather a CHARACTERISTIC, like blond hair or a love of music.
One of my biggest fears of when I have died is that the preacher will stand up and say, "Leatta had a full life and I never thought of her as disabled" or "It made me ashamed that she could do so much with so little". Believe me...God gave me an extra heap in so many areas that I often wonder if I do enough, so I hope the pastor says, "God blessed Leatta with so much and she used everything in her life to help others."
Thank you, Leatta! and to Adam
Leatta,
Your thoughts were so much more organized than mine ever could have been. It has taken me years to accept myself for who I am, and frankly, my disability is a part of who I am. For years, I refused to see myself as I am because I was told that I was "no different than anyone else."
Of course, I'm different from everyone else! I think one thing that would have made my teen years easier (mine were marred by bouts of depression and extreme insecurities, much of which stemmed from being different) was if I had been taught to EMBRACE my difference, not try to pretend that it didn't exist. Like Libbi, I think my parents meant well, but I think that it did more harm than good.
Many of my life experiences have been affected by my disability, some good, some bad. Without a doubt, I think that I would be somewhat of a different person if I didn't have bilateral PFFD. I don't think that I'd be a better person or a worse person, just different. I wouldn't see the world the same way that I do as a person with a disability.
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Adam,
As others have mentioned, you should definitely seek help, whether it's through a support group or a therapist. One thing that you may also want to consider is getting involved in advocacy work for people with disabilities. You may want to contact a local non-profit group and check out some volunteer opportunities that they may have available. In every community in every country around the world, there are SMART, WITTY, USEFUL people with disabilities who are not ashamed of themselves. Find some of those people and talk with them!
I send you all the positive energy I can muster on this Sunday evening!
Linda
Linda's wisdom
Once again, Linda speaks with great wisdom. My parents always invited adult people with disabilities to be a part of our lives as I was growing up and my father was a disabled veteran so it may have happened naturally, rather than planned. However, it made a huge difference because I expected, based on their examples, to be independent, successful and in control of my own life as an adult.
Plus I really got "permission" to BE DISABLED and NOT be ASHAMED once I got involved with advocacy with lots of other persons with disabilities. In the United States, the Americans with Disabilities Act passed right before I graduated high school so I got lots of instant local and national media role models.
I would also recommend the book "No Pity" by Joseph Shapiro to EVERYONE.....It shoud be required reading in high school or college. Other good book is "Moving Violations" by John Hockenberry, but it should be read AFTER "No Pity". If anyone has trouble finding the book, email me as I keep extras.
BTW "No Pity" has my personal favorite cartoon in Chapter 1 (about 3 pages in). It deals with the pity between disabled groups such as amputees thinking they are less disabled than the blind.
I have been misunderstood!!
I actually got a bit offended =/
I meant that saying Disabled is limiting yourself and in other words meaning that you suck >.<
I'm disabled though I am not disabled. Im not saying I'm normal nor different; I am myself. I refuse to put labels on people.
The only thing that matters is that I have a rich full life filled with loads of friends and family<3
I said that I WAS in a bad place, but now I'm out of it. I have been to a therapist and taken prozac and it didn't really help.
I have grown mature and wise, without the hlep of therapists and medicine
I would be dead right now If my mom had shoved my disability down my throat as a child.
misunderstood!
you all make it sound like i implied that i was suicidal - which im NOT... ive grown alot, and i feel good^^
i am not ashamed over my disability, but saying that you are disabled makes it all about you appereance and what you cannot do, THATS why im not saying that cuz i refuse to see me defeated. I am a human beign and i find no reason to put a "disability label" over your head... that is NOT how you reach out to people, they see a weak person who cannot get over their appereance.
i know you are all trying to help etc. but some comments made me feel bad.
//Adam "Laser-Drake"
Same things
I actually think we are saying some of the same things, and my comments are geared to Libbi and Linda's observations because everyone (with or without a disability) has a label or characteristics for which they are known.... accurate or not. I am simply challenging readers to not attach inaccurate negative limitations to the word "disabled".
And to clarify, I would not want artificial "canned disabled messages" shoved down our children's throats. However, I would hope every parent (not just those with children with disabilities) would use everyday learning opportunities to point out positive examples of "disabled" and not attribute negative qualities to this term. As we all know, we will hear and have this term used regularly as we navigate our societies and cultures, but the idea that "disabled" is a bad word would be like saying "Spanish-speaking", "Chinese", "musical", "athletic", or "woman" are bad words/characteristics.
Adam, if you have college plans or just like philosophy, I would encourage you to re-read the written comments when you have time and criticize them point-by-point in a private email. I would like to know if you find someone saying you are “not disabled” to be a compliment and why. I would love to hear your thoughts and get a conversation going. I think we would each learn a lot about each other’s cultures and philosophies. Or read "No Pity" and give me your thoughts on it, especially since it is such an Americanized book. I would gladly mail a copy to you, if it is not available in Sweden.
I can guarantee every reader that no one at this site is, was, or will trying to insult or harm you. However, we do discuss topics openly and in-depth and disagreement among us is not unheard of. Plus the private email feature can let all of us have great conversations on our views at a more personal and private level as needed.
Hello
Hey Adam! pleasure to meet you! It's good to know that you overcame your struggles. I always feel comfort in knowing that there is always someone out there in a worse position than you are in. Make the best with what you have, and remember that "different" isnt always a bad thing. Hope to read more from you soon! -Dyana
Sorry!
Adam,
You wrote that you feel so mistreated. I don't quite see how since people just expressed their opinions and no one attacked you, but if any of my comments offended you, then I apologize for that.
The way that you wrote your first message, it did sound like you were suicidal. I think that people who responded, myself included, were just concerned for your well being. I'm glad to know that you are OK now. That's a relief.
Per your request, I guess I shall now let you be.
Inspiring
I think you should be comended on how brave you are. Admitting your struggles, facing your fears and coming out victorious. Have a blast playing the bass and being part of a band. Make this your opportunity to shine.
Adam.
I am a mom of a new baby girl...i had to respond to your blog. Both of Brooke's legs are missing there femurs, fibillas and hips...she too has no arms. I would love to see pics! Brooke has a group on facebook. Please go look, and join if you want. It is called An Angel With no Wings. I would love to know how close you two are with your PFFD!!! Please let me know, I have NEVER found anyone that was missing both there arms because of this too.
Good luck!
Brooke's mom, Rachel