New invisible disability challenges

[utterrandomness]

Hey all,

Sorry if this gets a little ranty, but I just needed to get this out in a forum where people have a chance of understanding. I am a 23 year old student diagnosed with ADHD and Asperger's Syndrome when I was a child (though my parents didn't disclose this to me until I was older - they're mild cases of both and I manage more or less okay, though change is extremely stressful for me). I'm an academic (getting a master's degree currently) so my social awkwardness is pretty "normal" for my surroundings and people are often surprised I have Asperger's rather than just being slightly odd due to my profession. I have challenges, but I have a great partner who is very patient and always willing to explain social situations to me if I need it and is willing to tell me if I'm screwing up.

Last January (2011), I slipped on a patch of ice (living in Ottawa, Canada during a year where snow removal is considered too expensive is always fun) and injured my knee rather badly. 2 MRIs later they have determined that my patella slips (1st MRI), causing damage to the medial meniscus and the cartilage (though not the ligaments yet) because the groove in my femur is too shallow for my patella to track properly (2nd MRI). Translation: pain, all the time, especially when standing on a moving vehicle, climbing stairs and standing for long periods of time. I find the bus to be a huge challenge because I'm not old, or in a wheelchair, or on crutches. I manage with my osteoarthritis brace, but it isn't terribly visible. I often get people glaring at me or even calling me out for taking up a seat or asking for one, but it is extremely painful for me to stand. The buses here kneel for accessibility accommodation, which is hugely helpful for me in terms of not having to make a huge step getting on or jump down from the bus getting off. I have problems with the drivers on this one though, because they're apparently only supposed to do it for people with disabilities and mine just isn't obvious enough for some of them. One even screamed at me that I do not have a disability and that if I do, which he doubted, I should produce a card saying so issued by the transit company, which I would be fine doing, if the company actually issued such cards. (I now live in Kitchener, Canada; the bus company in Ottawa does in fact issue cards for priority seating). I am at my wits end about this problem, and calling the company to complain accomplishes absolutely nothing. They are planning to maybe do some accessibility training for their drivers "sometime in 2013" but are unwilling to do anything else. Although, they did tell me to get a cane (that I don't need yet) so that I "look disabled" which I found really offensive. They also told me that I could apply to use the MobilityPlus system, but those vehicles have extremely steep stairs, do not run on a schedule, and are for people who need further accommodation than the other buses can provide. The regular buses are supposed to provide all the accommodation I need if only people would believe me.

Again, sorry about the rant. I just needed to get this out.

In Disney related news, my partner and I are thinking of doing Disney World for our honeymoon, but I am concerned about being a nuisance if I can't walk for the whole day. I don't want her to have to push me in a wheelchair the whole time. I will probably need surgery in the near future, so that's a concern as well.

 

[clanmcculloch]

Hello fellow Ottawa native. Born and bred in Nepean.

I don't actually have advice on the public transportation front. Hopefully people with experience in this area will chime in soon. What I wanted to mention is that for WDW you can always rent an ECV so that you don't need to feel like a burden being pushed around. There's lots of info about renting ECVs on the regular disABILITIES! board in the stickies. I think it'll make a huge difference in the quality of your trip, not just for you but for your partner as well since I can't imagine her being happy if she's seeing you in pain or even feeling bad about being a burden. It's good for both of you.

I bet you do fit in well as an Aspie doing a masters in Kitchener. I suspect you've got fellow students in the same boat. Great school for engineering and math (I'm not trying to steriotype Aspies but I bet Waterloo has a much higher percent of Aspies than other Ontario universities and I'm saying this as an Aspie who's a mom to an Aspie with several friends who are Aspies; it's just where our strengths tend to lie in many cases).

 

[utterrandomness]

I expect there are more in the sciency programs, but I study global governance, I guess I'm odd that way, I don't do well in science and math. I think my ability to do well in the social sciences and the humanities is driven by a need to understand social relations.

 

[clanmcculloch]

Like you, I know there are other Aspies who aren't strong in sciences and maths. I was generalizing as a lot do seem to have strengths in this area because of the way our minds work with logic (as a kid, I could very much relate to Mr. Spock; I felt like a long lost relative LOL). But, every Aspie I've ever known does have his or her own unique talents so it's not odd at all, at least to me. I bet there's a lot of policy and structure involved and I do actually know others who I suspect are Aspies who are thriving in this kind of area as well.

 

[kuhltiffany]

Welcome! I'm not too far from you, in Guelph. I have a DS who was recently diagnosed with ADHD, CAPD and will undergo Asperger's testing in April, so I'm glad to hear of some positive stories. I'm also a social worker specializing in disability and chronic illness. I'd get a note from your doctor that you can carry with you and share with them when people get snarky.

 

[utterrandomness]

I lived in Guelph over the summer. It's a really nice city and I found the transit there very easy to use and the drivers friendly. Thanks for the suggestion about getting a doctor's note, I'll ask for one next time I'm there.

I'm glad I could help a little with my positive story about ADHD and Aspergers. It's a tough go of it sometimes, but I do manage okay.