Page 9 - HFA Dateline 2016 Q4 Winter

Words Matter

By M. Barusch

e know the bleeding disorders community is small and 3. Allow people to self-identify. Are you hosting an event for
Wthere may be just one group or organization where Spanish-speakers, women, men, people of color, people with
we live. We all want to do our best to include everyone, but bleeding disorders, partners or parents of people with bleed-
it’s challenging. Many of us have felt alone, like no one could ing disorders? If you don’t know for sure who to include in the
possibly understand our situation, and we feel pressured to invitation, invite everyone, and let the people in the requested
remain silent just to fit in or be accepted. But how often have group identify themselves. Think critically about the groups
we left others out? Often, when we hurt each other it is by you’re choosing. Is the current “mother’s group” really targeted
making an assumption that inadvertently leaves another at mothers or might you want instead to include all “primary
person out of the conversation. Here are some ideas to avoid caregivers?”
making assumptions.
4. Step up! And encourage others to step in. We all make
1. Use open-ended language. In conversations with people in mistakes but most of us do not want to hurt someone, or make
the community, and when talking online, try to use language someone feel left out. So, if you see someone accidentally
that is as inclusive as possible. You probably won’t know a making an assumption about someone else that might be
person’s race, religion, gender, sexual orientation, relationship hurtful, be sure to mention it so that they can realize their
status, or relationship to the bleeding disorder community mistake and do better next time. And maybe the one who was
until you get to know them better. hurt will feel more welcome in the bleeding disorders commu-
nity after seeing that they are respected.
2. Recognize that every family is different. Maybe a family
is headed by a mom and a dad, a single parent, a grandpar- The Care Access Working Group (CAWG) serves the bleeding
ent, two moms, two dads, foster parents, or a guardian. One disorders community with a focus on rural communities and
way of talking about a family in an open-ended way is to just those who have difficulty accessing quality care. Please contact
talk about the family as a unit. The adults in the family can be cawg@hemophiliafed.org if you have questions or ideas about
parents, guardians or caregivers, so until you know otherwise, inclusive language. n n
you could simply refer to them as “adults.”
Winter 2016 | Dateline Federation 9