sheliesshattered:

hellomynameismaddy:

darling-letemstare:

I don’t want you to love me in spite of my disability. I want you to love me, and every part of my existence.  

For example, please don’t say, “She has cerebral palsy, but I love her anyway.”

Say, “She has cerebral palsy and I love her.”

And no more of this “Most of the time I forget you’re disabled” nonsense, saying it like it’s a compliment. If you forget I’m disabled you clearly aren’t paying attention.

As someone with a genetic, incurable illness that involves quite a lot of intractable pain, and as someone who has been married for a decade — most of which was spent trying to get an accurate diagnoses for my chronic illness and associated disabilities — I have very mixed feelings on this.  

I don’t want my husband to love me in spite of being sick.  But it’s okay if he hates my disease.  hate my disease.  I hate what it’s done to our lives and I hate that I can’t be the person that I was when he married me.  He’s allowed to hate this uninvited, crappy, destructive part of our lives.  As long as he doesn’t love me in spite of my limitations.

Sorry, had to reblog this as text being as a link your text disappeared.

I feel very much the same. I know a lot of people will be throwing their arms up and saying well now I don’t know how to treat people with a disease/disability, what am I supposed to do?” And firstly, I can understand the frustration but secondly you do realise people with disabilities are individuals first and formost right? Try spinning it as “but how do I talk to girls when you keep giving me different information?” But how do I speak to boys?”

When you expect an entirely large portion of the population to behave the same way….. Or have one individual speak for everyone- and not by their consensus…

I think most of us though don’t mind being asked questions but about us individually. I am not a spokesperson for everyone with Rheumatoid Arthritis but I can speak of my own situation and what the literature says.

And please don’t compare one individual with another. It’s very hard to understand from the outside that physically we have different limitations. It’s not just that we cope differently, there are biochemical reasons for some of us to have effects others don’t and vice versa.

So basically we are individuals first.