Coming to grips with disability

Posted by Karen - June 13th, 2009

I had a funny experience recently that I’ve pondered a lot.  

Our occupational therapist and physiotherapist suggested we apply for special disability benefits for Miranda from the Province of British Columbia.  These aren’t income supplementation benefits, but rather benefits “to help families with severely disabled children pay for medical and rehabilitation equipment.”  You’ll note I italicized the words “severely disabled”.  That’s the part I had the problem with. 

For quite a while, I declined to apply to this program.  I put it off, not wanting to look at those words.  Finally though, prudence got the better of me, and I decided to go ahead with the application process.  It involved making an initial paper application, and then having an interview with a social worker or nurse who assesses the child, writes a report and then submits it to an internal committee for consideration.

In going through this process, I had to focus on all the worst parts about Miranda’s diagnosis of Fibrodysplasia Ossificans Progressiva, and then emphasize those parts.  This was emotionally difficult, because my general tendency is to do the opposite.  In our day-to-day life, Pete and I always think about FOP and the safety or adaptive requirements it entails for Miranda, but it’s from the point of view of maximizing all her experiences and promoting as normal a life as possible.  But in the process of completing this benefits application, I had to talk about the extreme level of disability which FOP eventually causes, and about how FOP is unpredictable and swiftly brutal, with some flare-ups causing almost immediate permanent immobilization of body parts.

I gritted my teeth and went through the process of highlighting all the awful details.  I pushed especially hard on the unpredictability of FOP.  I didn’t mislead in one iota of anything I said, but it SO went against my grain to be going on and on, especially in the interview, about how bad everything is with FOP.

Finally we completed the steps of the application and waited for a decision to be made.  During that time, there was a part of me that wanted Miranda not to be approved.  My girl is NOT severely disabled!!  NOT NOT NOT!!  It was hard to bear thinking of her with that label.  Also, I confess that there’s a part of my mind which is always thinking, “Miranda’s FOP might not progress too far in the next several years.  Lots of people don’t get hit badly by it until they’re in their 20s.  So, Miranda might not experience too much disability, and in the mean time, our amazing researchers might come up with a drug for FOP in the next 10 to 15 years.  Then it’ll be problem solved – Miranda will be able to live like everyone else, and get some surgery to correct the damage done so far.”  That part of my mind kicked in a lot in thinking about these benefits.  Hey, Miranda might not even need these benefits, right?  Right??

I also fantasized that though I focused on all the really difficult stuff about FOP in our application, maybe the people doing the assessment would see it differently.  Maybe they’d look at Miranda and think she’s not all that badly off – she can walk and run normally, use her arms and hands (though in a partially restricted way), feed herself, use the computer, draw and print, and play with other kids…  Plus, she’s really smart.  I know the assessment panel is used to considering kids with things like cerebral palsy, muscular dystrophy and spina bifida, and I thought maybe Miranda might not come across as so badly off compared to some of those kids. 

But…  In the end, the benefits were approved.  I couldn’t kid myself – the panel considering the application obviously understood everything well, and made what is (though I hate to admit it) the right decision.  Gah.  Our OT, physiotherapist and pediatrician were all pleased when I told them about this, but I can’t say I shared their enthusiasm…

Don’t get me wrong.  I’d do anything for my gorgeous girl, and I want her to have everything she needs to help her adapt to life with FOP. 

Here's my gal having fun playing with a dollhouse.

Here's my gal having fun playing with a dollhouse.

But, inside my own head, I don’t have to like it that Miranda is seen by the Province of British Columbia, severely disabled.

3 Responses to “Coming to grips with disability”

  1. Amber says:

    Oh, Karen, I can only imagine how difficult this was for you. Miranda is a bright and amazing little girl, and I can understand why you want to focus on the positive. It sounds like you made the right choice, though, and I hope that the benefits are helpful.

  2. kelly sanderson says:

    We went through the same thing with Jasmine and she is now classed as disabled in the uk. It is hard thinking about the worst things about fop but like you im hoping that there will be a treatment before it effects her whole body.
    Miranda is a beautiful little girl.

  3. Heather in Washington State, USA says:

    I have a friend whose child had cancer, and she didn’t want to partake of the Make-a-wish Foundation services because she didn’t think her daughter needed it, since she was going to beat the cancer and be cured. Well, it didn’t happen, and she regrets not allowing her child and family to enjoy a Make-a-wish experience. The focus was so firmly on getting better and overcoming, that when the end came, it was such a horrible shock. Take advantage of services. Make your life easier, and enrich the life of your child. It’s hard to be the recipient of compassionate care, you don’t want to seem needy or helpless, but if it eases a difficulty or brings some joy, accept it.

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