What is ‘Ask a Youth’?

Whether you’re a youth, parent or professional…Got a question that’s been bugging you lately? Want to hear about how young adults with chronic illness or disabilities handled it? Here’s your chance! Post a question and our team of 14-26 year olds will weigh in  by sharing their thoughts, experiences and advice.

How do you feel about your disability when it comes to dating?

Nicole T.- I’ve never had good luck with that. Most guys just don’t seem interested once they figure out you are disabled.


Matthew B.- I agree, same for me with girls.


Karen S- Hmmm…that is a good ask a youth question!
I’ve dated plenty of guys, it’s not hard to find someone to date but it is a struggle for me on keeping someone. They say they understand and know someone like that and you think it’s all good and glory until they see your disability than it’s just water underneath the bridge and truth is, they really don’t understand and they just say that to make themselves not look dumb.


Matthew B- I seem to be able to attract women, but not keep them. I feel like once they see the real me, and what I have to deal with, with both my health, and family, they don’t stay long.


Sylvia – Most of you know I had my first seizure in high school. When it came to dating, I found it was really important to be up front and matter of fact about it. I accepted epilepsy as a part of my life. I wanted, and needed, anyone I dated to see me as a whole person. How someone reacted to that initial conversation about epilepsy was pretty telling. (and it sometimes became apparent that they weren’t the kind of person I wanted to date!) I’ve been married almost 30 years now – to someone I started dating at 18. He cared enough to learn about epilepsy, and what he needed to do, or not do, to help. He never made my epilepsy a bigger part of my life than I did … and I think that is one of the things that I appreciate most.


Julie – Dating. It seems to be a ginormous issue. From the time I was around 10 or 11, I desperately wanted a boyfriend, but I believed that my disabilities would make it impossible. There were people who said as much, and I believed them. It was devastating. I came to think that I could never accept myself (and be happy) unless a guy accepted me, my body and it’s brokenness. (I had it backward.) I spent years looking outside myself for validation but all the while my own fears and beliefs were the biggest problem. They were self-fulfilling. I wanted someone else to prove that I was okay. But since I didn’t believe it, no one else could prove it to me. In my late twenties, out of desperation really, I began digging deeper for what was lovable about me. What did I have to offer a partner? How could I uplift his life, despite the drawbacks? What had my challenges given me? Strength? Understanding? Weren’t those worthwhile in a partnership? Were my physical limits & baggage really that different from your average person’s emotional baggage? NO! I began to realize that I had to start practicing self-love, so that I could expect (and accept) love from others, as well. I started to shift my old sad ideas (lies) and “story” about what was possible for me. I worked on changing my negative self-talk and I worked on being kinder toward myself (it wasn’t easy!) But I started to believe in my worth and to feel much better, even before I met my first boyfriend and then later met my husband… I used to think I had plenty of “proof” that I wasn’t attractive and men would never be interested in me. But all the while, I was hiding behind those excuses so I didn’t have to risk my heart again. I listened to my fears because i thought that hiding would keep me “safe.” But it also kept me alone. It was hard to open myself up after feeling heartbroken and rejected. But I’m so thankful that I did. My husband and I have been together for 21 years and have two healthy boys… We’ve all been through situations that left us feeling unlovable. But the past doesn’t have to dictate the future unless we keep telling ourselves the same fearful story and keep looking for proof of it. It turns out that it isn’t our unusual conditions that make a longterm partner improbable. It’s the limits we put on ourselves that really block the way. Self-love is a very attractive & magnetic quality. There will always be hurdles for everyone, and it isn’t an easy fix, but learning to love ourselves, first, can bring a lasting love from others as well. As the song goes, “Keep your heart open, love will find a way.” (Thanks for reading, I’ll shut-up now!)


Jillian – I’ve never had good luck with dating, so I don’t know that I have much of an opinion on it.


Karin – Several of you mentioned not having much luck dating. Do you think it is disability related? Self-confidence related? Age related? Or no idea…..just no luck……?


Julie – Great question Karin!


Jillian – All of the above.


Nicole T.- Disability related; people not being accepting


Karin – Has anyone tried to date other people with disabilities?


Julie – Another good question!


Jillian – No


Nicole T. – I have a hard time finding someone who is on the same level is me if you know what I mean!


John J. – Work is my girlfriend.


Nicole T. – It really is because I know so many nice guys but there either not interested because of my different ability or they’re not on the same level as me!

 

Question: What does self-advocacy mean to you?

Sarah F – Self- advocacy to me means being comfortable enough to stand up for yourself. It means surrounding yourself with people who give you enough confidence in yourself to stand up for what you think is right for you. It means standing up for yourself as well as others who have the same problem


Nicole T- Self advocacy is being able to speak up for yourself and others.


Karen S – Self Advocacy means to me is being confident in yourself to stand up for what you want and using your voice to speak up to those people who don’t believe in you. Using your voice by taking control of the decisions to make a stand and put a stop to whatever you don’t want to happen. Only you know yourself better than anyone, it’s you that have to speak up and say something. If you don’t use your voice, you will end up miserable and having to be taken advantage of, being able to speak up for yourself can go a long way!


Zachary -Self-Advocacy means knowing what you believe in, knowing yourself and being able to stand up and fight for both.


Kalie – It means to me. Sticking up for yourself. And what you believe in at the time. And if does not work the first time around trying a different approach. And be nice. But if you are not getting the answers right off that you need. Don’t give up. And keep bringing it up. With my experience. It could. Take me. Three days. For somebody. To understand. Where I am coming or sometimes. It can take up to two year or more. Dependent on the situation…- every situation is different- and trust me it can be difficult. At times –

This question is from Karin Harvey-Olson, Program Director for YEAH Council:

Three of my kids and I just finished up a run in a play with a local community theater group. There were several people with disabilities and special health care needs involved. This is not a special integrated group, just a regular community theater that happens to do a great job integrating everyone that wants to be involved. How many of you go out for general community activities? Or do you prefer activities for people with disabilities or that are created as an integrated activity?

NT: This is gonna sound bad but I don’t feel that I would be accepted in a regular group of people, that’s why I go for groups of people who are like me differently abled. But you might have made me have a change of heart and go out and try a group that is filled with general community people.

 

ZH: All of my outside activities are primarily with two friends and their friends. Neither are disabled. I just go out for a good time, I honestly don’t plan ahead a lot to find places that are accessible. I’m involved in an online movie club. It doesn’t involve going out but it is a community. I’ve made a lot of new friends there. I’m not usually the one who initiates going out. I’ll go out if invited by friends or family but it’s not something I personally seek to do. When I do go out, it’s usually a movie or maybe a concert but it does vary wildly. Last night, I went to a Roller Derby!

 

KS: A long time ago, I wasn’t into sports. Once, I tried out for my school team’s softball in middle school. I wasn’t accepted in so I felt really hurt. My brother was in high school and my mom was talking to someone in his school about how this gym teacher convinced me to go play softball and said all I need to do is show up to tryouts and I’m already on the team. Well after tryouts, the gym teacher gave us a paper. Mine said, “Sorry you didn’t make the cut. Come back next year.” I was heart broken. I didn’t have friends in school, I was bullied a lot. Just when I thought I could be accepted in somewhere I wasn’t. So then my mom said at my brother’s school, they have a group called Special Olympics that plays everything and will teach me how to play. At first, I said to her, “I can’t fit in middle school, how would I be able to handle a high school Special Olympics?” She said to me that this would be different. So I trusted her judgment and went to one of their practices. I was shy, but the kids were so witty! I laughed alot and then I started talking to them. I felt like I fit in somewhere. A few years later, when I got to high school, I had friends but the team I was on broke up so the coach had to put a town team together and that was different. When I finished high school, I joined a 21+ league because I felt like there’s no such thing as labels, it’s all in my head. But felt like I didn’t fit in with the 21+ league. They would yell at me and if I didn’t hold the bat right, they showed me. I emailed the person in charge and asked for another team. It was better but I still felt like I wasted my money to feel like an outsider again. I prefer hanging out with my friends instead of joining a sports groups with people I don’t even know. It’s difficult trying to get to know new people because I can be socially awkward.

 

PH: I have taken part in lots of different groups since becoming permanently disabled several years ago. At first, I found it very difficult to fit in or really be accepted in any of them. I learned that part of that reason though was because I, myself, had a difficult time accepting who I was and I was more self conscious as a result. I needed to just relax and be me and accept that some people will accept me, want to get know me, give me opportunities, and others won’t. But really, that is the case no matter who you are . I have discovered that I am not my disability. It does not define me and I am capable of anything, just in a different way. I have learned to adapt. It is not a disability but an adaptability and this mindset has helped me branch out and not limit myself or my activities. There are pros and cons to joining any activity, but I have learned to focus on the positives rather than the negatives. This is a choice that I can make. I have also accepted that people will ask questions, unintentionally limit, and not necessarily understand me in some group settings, but this is on an individual basis. Instead of being infuriated by being treated like a child, told that I can’t, questioned or feeling like I don’t belong or I am an outsider, I am thankful that people care enough to ask are concerned, or help me. In any group that I have belonged to, I have found support and kindness from individuals. There are some groups who are willing to open their minds and give me a chance to see me, not my disability. Community theatre has always been accepting, but there have been times where I need to prove that I can do it or modify things so they can see the possibility. There are others though, like my latest show, where they see the possibility when I can’t and help empower me when I am afraid or unsure. It is all about learning, teaching, and growing. Honestly, all groups are great in their own way. I just need to accept that sometimes I need to open doors, break walls, change perceptions, and not put myself in a box no matter who or what I am doing.

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