RISEde is a self-advocacy group established in 2022 to Redefine Independence and Social Empowerment for people with disabilities in Delaware. Sponsored by The Arc of Delaware, the group is led by Benjamin Shrader, an experienced self-advocate who sees choice and self-directed services as key to unlocking potential through community and shared responsibility. Benjamin’s Bullhorn provides his regular updates on disability news, events and perspectives of interest to the RISEde community.
A few weeks ago, U.S. Senate Majority Leader Chuck Schumer directed the sergeant at arms to no longer enforce the senate dress code. Although not explicitly stated, the move was widely interpreted as a gesture towards Pennsylvania Senator John Fetterman. If you don’t know, Senator Fetterman suffered a stroke near the end of the primary last year. His general election campaign was the target of ableism both from his political opponents who resorted to offensive tropes, as well as from within his own party, who cast doubt on his ability to help them maintain the all-important Senate majority (even though he went on to do exactly that.).
The American Stroke Association recommends loose fitting clothing in order to create a most-accessible dressing routine. Again, while not explicitly stated, many see this effort as a reasonable accommodation, similar to those described within the Americans with Disabilities Act. This perspective once again allowed the senator’s political enemies to expose themselves as ablest. Opinion columnist Stephen L. Miller wrote, “When do we stop accommodating John Fetterman’s lies about the severity of his condition, all the while being told by medical staff that he requires no special treatment?” And just as before, the backlash was not limited to the opposing political tribe, with some criticism coming from Senator Fetterman’s party as well. Senator Dick Durbin, the second highest ranking Democrat behind Schumer, said of the change “I am concerned. The senator in question from Pennsylvania is a personal friend but we need to have standards as to what we wear on the floor of the Senate.”
Unfortunately, words that amount to “why are you getting special treatment?” and even “you’re my friend, but…” are not at all uncommon among able-bodied folks who have very little understanding of the disabled experience. For this reason, some disabled advocates themselves decry “special treatment.” We don’t want to be singled out and isolated.
However, the lines between accommodation and "special treatment" are often blurred. For example, a restaurant owner may complain about building a ramp or creating wider doorways--accommodations necessary for disabled patrons--but does he do this because of the actual ramp-building, or is it the recognition of his own fragility that causes his angst? When we force a shift in personal bias, we force the non-disabled population to put themselves in our shoes, and thereby highlight their own fragility. While this may sound bleak, it also forces them to see our existence, to see us thriving in society.
Even though RISEde is a group by and for people with disabilities (not an educational tool for able-bodied people), I would like to think that groups like ours do challenge these biases in a certain way. Think about it. Just by telling a friend or colleague that you’re going to an upcoming RISEde meeting, you're reminding that person of a shared disabled existence. And this normalization of us in community with one another may encourage people to open up their communities, too, hopefully leading to fewer complaints about “special treatment” and greater levels of understanding, empathy and collaboration.
In solidarity we RISE!
During our May 2023 meeting, members of RISEde wanted to set a path forward for the fall and spring, establishing a mission from which to grow our group. As we began brainstorming a number of issues, we quickly realized that everything we wanted to do was tied to our ability to access transportation. Meaning, if we couldn’t go anywhere, we couldn’t do anything.
So the decision was made to begin a bold undertaking. Starting this fall, RISEde will research, hold meetings, and ponder solutions with the various stakeholders — Medicaid and other agencies, home health companies, etc. The plan is for these efforts to form the basis of a legislative framework to present to legislators sometime in the spring. This framework would hopefully loosen some of the liability issues facing home health aides that bar them from being able to drive clients. If successful, this will open up new worlds of opportunity for Delawareans with disabilities.
This summer we will meet socially and get plenty of rest because we’ve got a lot of work ahead!
For many decades, readers of popular Marvel comic books would finish a story and be greeted by something called “Stan’s Soapbox.” Such pieces would function almost like letters wherein Editor-in-Chief Stan Lee could educate young readers (true believers, as he called them) about issues of the day. Lee covered everything from racism and poverty to war and hatred. His goal was to give kids a context for the chaos they were seeing around them in the 1960s and '70s, as well as a firm grounding in the reality of the day for the fantastic story they just read.
I’ve always liked the idea of this soapbox as a way to communicate frustrations and feelings, forging a better world together. In Stan Lee’s tradition comes “Benjamin’s Bullhorn.” Through this platform, I plan to talk about issues facing the disability community today as a whole. And more specifically, I hope to discuss how those things tie into the mission of RISEde.
Here we can discuss things in the news that I feel require a more grounded context, just as Stan once provided his readers. The disabled voice is so often missing from everyday conversations, even those that ostensibly pertain to said voice. My idea behind the bull horn is to create a space where that’s no longer the case. I can’t promise to end every letter with a cool catchphrase (Stan was fond of closing with “Excelsior!”) but I can promise we’re all going to learn something and hopefully grow as a community a little bit too.
I will have more to say about RISEde’s exciting first mission in the coming months. So hold on tight, true believers! We’ve got lots of excitement ahead of us!