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Fresh Mud

A blog about living with FSH muscular dystrophy. Questions?

Post 42 of 46

Having choice taken away

Wednesday 14th December, 2022

It is a sad and depressing fact that the people who tend treat me with the least respect with regard to my disability are those closest to me. For example, my mother used to refer to me as her “disabled son;” she rarely called me her third or youngest son and it was upsetting because it was an unnecessary label. It took me years of complaining for her to finally stop.

The most aggravating thing, though, is having choice taking away from me; that is, people making decisions for me or doing things based on what they think my answer will be without actually asking me. Things like not inviting me out for a meal because they think it will be too late or too cold for me. Admittedly, there have been plenty of occasions when this has been the case, but it is not always so and I would very much like the opportunity to decide for myself.

A specific example that has occurred recently is a couple sending out “save the date” cards when they decided on a date for their wedding; everyone in the family received one but me, the reason being that the wedding is in a hot country and it was assumed I would not want to travel. It hurt. (I received an actual invite, but only because someone else intervened.)

The older I get, the more likely I am to speak up and make myself heard when things like this occur, but for everyone in my life that I managed to “train” away from doing this sort of thing, there seems to be a new HCA or someone else who has the same habit. But I will never give up trying.