This issue featured disability activists who discuss ableism in the hope that we will all do better at recognizing ableism and confronting it. We were introduced to the personal perspectives of Christina Eisenberg, Jeiri Flores, and Emily Ladau.

Here is yet another disability thinker and writer who challenges her readers to think beyond the norm – Keah Brown.

In her 2019 book, The Pretty One: On Life, Pop Culture, Disability, and Other Reasons to Fall in Love with Me, Keah invites us into her world.

“I am a twenty-six-year-old black woman with a physical disability who is much more than her disability. However, I understand that the erasure of disability in our society is just as harmful as the negative portrayals of disability throughout our society. For a really long time, I believed that ignoring my disability and tucking it into the deepest parts of myself would make it go away. But that isn’t the way the world works, and that is no way to live. My disability is not a thing to see past but instead a thing to acknowledge and accept before able-bodied people an and I continue existing at the same time in this world. I have both physical and invisible disabilities, and I refuse to be ashamed of them, because they are beautiful in their uniqueness and their familiarity. They are mine, but they also belong to a world of others, and that makes them worthy of my appreciation and acceptance.”

In this issue, we featured a parent activist who addresses mental health through the lens of equity, as she strives to serve the whole community. Sara Taylor is the founder of BIPOC PEEEEEK - Partners in Community of Black Indigenous People of Color, Parent Mental Health Project.

"Many parents struggle with hurt, guilt, and shame and are often blamed for their child’s condition. I would encourage any parent to honestly search their heart and recognize that they have a child that is 'sick' and who needs some extra care and services. There are many support groups available through trusted community partners that will offer peer support for parents and caregivers. Speak up for your child in school, community and within the health and mental health system. Our children are not bad or criminals. They are sick and deserve the care and empathy that sick children should receive. We must collectively work to combat the stigma."

In this issue, we looked at ourselves as parents of children with disabilities and found out that sometimes we need help but hesitate to ask for it. Here are some tips offered to get the help you need:

Create a list of needs. How many times have you heard someone say, "Let me know if I can do anything." And how many times have you said, "I will" — and then didn't? People want to help but they don't know how. Make a list of the things that would make your life easier.

Be honest about what you need. By letting people know about your situation, you're allowing them to enter your world. When you say, "Going to the hospital by myself is hard," you're giving a friend a chance to say, "Let me come with you."

Enlist other caregivers. Parents of children with disabilities often feel that they're the only ones who can handle their child's care. You could try finding or creating a parent group to make connections with people who might be able to swap babysitting time. By leaving your child with a trusted sitter, family member, or a friend, you are also teaching your child to handle change.

Consider respite. Respite services also may be available for your child. These services can include a caregiver coming to your home to give you a break for a few hours or overnight, or a drop-off program in the community.

Turn to the experts. Social workers can tell you about local services and support in your area that can help take the burden off you (and your bank account). This includes respite care, government benefits, family reimbursement, and other financial supports. Social workers also help with emotional support, including ways to practice self-care.

Adapted from Getting Support When Your Child Has Special Health Care Needs

Family advocates, like those at Starbridge, can support you in getting connected to services and resources. Please visit our website or contact us.

Could you or someone you know use some help bridging the gap between getting a diagnosis for your child and receiving services? Learn more about Mind the Gap by calling the Starbridge Intake number at (585) 224-7359 or use the Contact form on the Starbridge website.