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I spend a fair bit of my time talking online with parents of disabled children. Especially parents of congenitally blind children, like mine. My disabled friends and I go into these parent spaces to offer hope and resources. Sometimes, though, we encounter statements that can be triggering for us. Parents describe feeling “devastated” upon learning that their child is like us. And, often, they describe feelings of grief.

When someone becomes disabled later in life, or their disability progresses, grief can be a natural response. Acquired disability comes with losses of functionality, and a loss of nondisabled privilege. It makes sense to me that family members of those with acquired disabilities will also grieve the losses of things their relative was once able to do or enjoy.

Grieving disabilities that start at birth, though, is something that seems less intuitive to me. It’s not necessarily bad, but it takes a little more unpacking.

I was ten years old when I first learned about my parents’ grief they felt after my diagnosis as an infant. I won’t go into their story here, because it’s their story, not mine (and they’ve told it elsewhere). But, learning about my parents’ grief made me sad. I was a good girl who wanted to please my parents. And I wanted to believe that my birth was nothing but a joy for them. A little self-centered perhaps, but I was ten. It was painful to hear that my parents were disappointed by something about me that wasn’t even my fault.

As an adult, I’ve come to accept that it’s not all about me. And, I am grateful that my parents moved beyond grief in their own way. But, it still pains me to hear other parents say they grieve when they have a child who is born like me. I wonder, What exactly is it that they’ve lost?

This issue of grieving congenital disability came up recently on the Disability Wisdom Discussion Group. In that discussion, a few parents affirmed that parental grief is partly related to societal misconceptions about disabilities. But, they also said that some of this grief could be experienced by all parents. Because, they said, parents have high expectations for their children’s futures. They have dreams at the outset that, disability or no, can’t always come true.

I thought about my own experiences of grief. I grieved when my grandparents died. I’ve had similar feelings, though less intense, when I had close relationships end. Those losses were clear. But I also felt grief when I had grant applications rejected. When you write a grant, after all, you are building up expectations of what a new project will be like. You have to dream up a budget and a list of deliverables that will emerge from your project. So after you’ve done all this, and get a (sometimes bluntly rude) rejection decision, it feels like a project was lost, even if that project wasn’t ever actually a thing in the first place.

Of course, expectant parents do the same kind of thing. They name the new baby. They dream about experiences they will share with the child. They build up expectations. If those expectations aren’t met, they feel a loss.

I thought about the expectations I had for a spouse. When I was in college, and first getting involved with disability rights, I swore that I would end up with a blind man who shared my passion for blindness advocacy. It was such a big part of my life that I couldn’t imagine not sharing that in common with a partner. I dated a few blind guys who did, indeed, share that passion. Then I fell in love with somebody who is sighted, and while he is passionate about disability justice in his own way, he’s not big on the NFB events.

There was a point when I did feel a sense of loss at not having my husband go with me to all the banquets and other big blindness things I attend. At some point, though, I realized that it was unfair to expect that of him. Finding him was a gain, not a loss. I shouldn’t impose my own expectations on our relationship.

It’s natural to want the best for children before they are born. But, perhaps we can broaden our idea of what a positive future might look like, and acknowledge that disability can be a part of that. Children will not always share all of their parents’ interests, and in the same vein, children may not share all of their parents’ abilities. But no matter what, their birth is still a gain.

I want to see a day when having a disabled child isn’t such a surprise. It just is, and it’s something we expect could happen. And there may be sadness related to the hard parts of disability, the medical needs, the challenges or the exclusion. But, what if congenital disability wasn’t seen as a loss or a subtraction, but just something we come to expect and embrace in a subset of the population?

I do agree with the parents in one important way. Providing accurate information about disability experiences is one way we can help mitigate some of the grief that new parents feel. By offering information and hope, we can not only help reduce the grief, but also help equip parents to move past it to a point of acceptance. That is why I stay in the parent spaces, if they’ll have me, and that is why I post on this blog. I hope that by sharing my own experiences, and amplifying the voices of other disabled people, we can redefine the meaning of disability for the generations not yet born.

Wow, I can’t believe this blog has been up for almost three years and has gotten more than 30,000 views! I deeply appreciate all of you who have read, shared, subscribed, followed, or contributed posts to help reduce ableism and educate folks on the lived experiences of people with disabilities.

Now that this blog has a strong initial collection of 145 posts, I am going to move from weekly to biweekly posting. Expect a post from me on the first and third Fridays of each month (and the fifth in months that have five Fridays). So, I will post next week, take off Dec 27, post again January 3, January 17, etc.

Got any requests of topics to cover? Or, do you have an idea for a guest post? Email me at arielle@disabilitywisdom.com.

With so many disability organizations out there, it can be hard to know where to go for support, or where to direct your limited money and time. In this post, Meriah Nichols shares her top picks. No organization is perfect, but the majority of orgs on this list are led by disabled people ourselves, and have a track record of supporting disability justice. Consider these orgs if you wish to educate yourself about a specific disability or about cross-disability issues, or if you are looking to give your time, money or talent to the cause.

The Disability Organizations Doing the Best Work These Days

“We thrive on comparison. And we trade in its marketplace with the currency of human dignity… Our worth is inherent. And never, ever subject to comparison.” – Diary of a Mom

I’ve had at least two people tell me they were glad they weren’t blind, and then describe their own misfortunes. One guy said he was receiving dialysis treatments for his failing kidneys. The other disclosed that he was homeless.

As a needle-phobe, I can’t imagine anything about my own life being worse than having to get my blood filtered through a machine. Nor can I imagine my daily struggles rivaling the absence of a warm bed each night.

But that is the nature of comparisons. The criteria for “better” and “worse” are defined by the one making them. We tend to view familiar challenges as less “bad” than unfamiliar ones. And, we have a psychological need to see ourselves as being on top.

People engage in “social comparisons” all the time. Doing so can serve several functions. We might use “upward comparisons” to measure ourselves against the admired achievements of older siblings, mentors, or celebrities. In this way, upward comparisons can spur growth. “Downward comparisons,” on the other hand, are comparisons we make to those we perceive as worse off, or less competent. These downward comparisons help us protect our self-esteem from threats.

Social comparisons are rampant in the disability community. We readily compare upward to nondisabled peers, or to our former nondisabled selves. We face the daily self-esteem threats of being put down by nondisabled people who express superiority and gratitude that they are not like us. And, naturally, the temptation is to compare downward to others whose disabilities seem worse than our own.

I know this, because I used to do it quite openly. And I still probably do, to an extent.

As a child in public school, I knew that I was terrible at sports and drawing. I felt inadequate because of the many areas in which my sighted peers seemed to beat me. But, I also discovered that I was good at academics. After being labeled “gifted” in the third grade, and tracked into the “Program for the Academically and Cognitively Talented,” I relished my skill in reading and math. While some of my peers competed in sports, I competed in spelling bees and the “Battle of the Books.” And, along with the heightened value I placed on academic success, I came to perceive those who were less academically skilled as less able.

In the sixth grade, a small group of students came into my advanced language arts class. They were not in the rest of my classes, and they were accompanied by another teacher, probably a reading specialist. One day, I recall asking their teacher, in an arrogant tone, why “those kids” were in my class. The teacher told me that was a mean question to ask. She added, “How would you feel if somebody didn’t want you in their class?”

I didn’t get it at the time. But, today, I recognize my error. I didn’t know those kids well. They may not have been able to read as fluently as I could. But I’d bet any of them could have kicked my butt in a game of basketball. More importantly, though, they deserved to be in the same class as I was. Their learning disabilities had nothing to do with their worth.

At the time of my conversation with the reading teacher, though, I vaguely recall feeling isolated. I think it was during some kind of class social activity, where my blindness was seen as a liability. So, I protected my self-esteem by putting other people down whom I perceived as more “disabled” than I was.

These kinds of comparisons have divided the disabled community. As my opening quote illustrates, people with intellectual or psychiatric disabilities have been judged as less worthy, less deserving of civil rights than those with physical or sensory disabilities. People from the latter groups may celebrate the fact that they don’t belong to one of the former groups, and use that absence of stigma as a reason to argue that they are worthy of inclusion. I also see this kind of social comparison within impairment groups. For example, a blind person who has developed strong coping skills may put down a blind brother or sister whom they perceive as “sheltered” or not “independent” enough. These comparisons prevent impairment groups from collaborating toward common goals, and they prevent some people from being fully accepted within their own impairment group, particularly if they have multiple impairments.

For these reasons, I struggled to identify with cross-disability communities. I always felt I had little in common with those who had learning or intellectual disabilities. At the same time, when I attended cross-impairment events, I felt that others looked down on my disability. Though blind people enjoy privilege within the disability world, we are also “low-incidence,” rare within the community.

It wasn’t until a few years ago, when I started meeting and reading the writings of other disabled people with different impairments, that I began to recognize some of our common experiences. And I realized that comparing myself to others with different impairment experiences was pointless and counterproductive. I can appreciate my own strengths and weaknesses without using them to put down others, or conversely, to burden myself to meet an artificially high standard.

The man with the kidney issue, and the homeless man, are neither better nor worse off than I am. They can do some things I cannot, and they likely have some days that are better than mine. They also have challenges I can’t imagine. Despite our differences, they probably share many commonalities with me, too. Comparing our lives is comparing apples to oranges.

This Thanksgiving season, let’s appreciate what we have, without comparing ourselves to those who don’t have what we have. And let’s appreciate what we have, without comparing ourselves to those who have things we lack. Above all, let’s acknowledge that despite the hand life has dealt each of us, and despite what we have achieved or not achieved, we all have the same inherent worth as human beings.

When strangers first discover that I am blind, one of the first questions they often ask is “How much can you see?” or “So can you see anything at all?”

On the other hand, some people assume that if you self-identify as blind, you must be “totally blind.” These are the folks who accuse the blind person of “faking” if they use a cane, yet can see to move around a silent obstacle.

Most disabilities can be classified into some sort of severity ranking. We tend to be fond of subclassifying people, first by type of disability, and then by (perceived) severity. So, many neurological disabilities are graded into mild, moderate and severe. People with physical disabilities might be labeled according to their degree of motor impairment. People with impaired vision get classified according to the amount of functional vision that remains. And so on.

These severity labels are common in medical and educational settings. But they have several problems. The problems with “functioning labels” have been emphasized in the autistic community, and many of the issues autistics point out about functioning labels can also pertain to other disability groups. Specifically, severity labels can be problematic if they:

• Oversimplify: Disabilities are rarely one-dimensional, but instead have multiple dimensions which may or may not be correlated. For example, autistic people can experience varying levels of impairment in social communication, motor planning, and sensory processing areas. Someone could be severely impaired in one area but mildly impaired or unimpaired in others, or equally impaired in all areas. So, the autism spectrum has been described as more like a color spectrum than like a brightness spectrum. Similarly, intellectual disabilities often cover two dimensions, “intellectual functioning” and “adaptive skills.” Someone with a visual impairment may have great visual acuity, but a very narrow visual field, or vice versa. Severity labels often oversimplify by treating a disability as a single construct.
• Are treated as constants: The impact of disabilities can change from setting to setting, day to day, or year to year. Someone may be highly disabled in one setting but only mildly disabled in another. People might have episodic flare-ups in symptoms or periods of remission. Severity labels ignore these nuances.
• Used to deny support needs: Assistive devices and supports can benefit many people with disabilities regardless of severity. However, because such devices and supports are scarce, they tend to be given only to people deemed as having the most severe impairments. For example, braille literacy can benefit people who are physically able to read print but cannot do so efficiently or comfortably, yet many school systems only offer braille to children who cannot read print at all. On the other hand, some supports may be denied to people labeled as too “severe” to benefit, such as augmentative and alternative communication (AAC) devices.
• Used to rank people’s human rights: Too often, people with more “severe” disabilities are treated with less dignity or respect than people with “milder” disabilities. This may happen consciously or unconsciously. For example, a parent may overshare details about the life of a child with “severe” autism and justify it by stating that their child would not understand the privacy violation. In other circles, people with milder visual impairments may be asked to guide or “help” those with total blindness, in a paternalistic way
• Used to make assumptions about quality of life: People with more severe disabilities do not necessarily have worse quality of life than people with milder disabilities. In fact, people with milder disabilities may face unique struggles for identity, acceptance, and support that people with more severe disabilities get automatically from disability communities.

So, should we keep classifying people according to the severity of their disability?

As someone with “severe” blindness, I wouldn’t mind just calling all legally blind people blind, or all autistic people autistic, and doing away with the focus on severity. I recognize that descriptors like “blind,” “Deaf,” and “autistic” carry positive cultural connotations and that people benefit from being considered part of these groups, regardless of how severe their disability is.

But, some people would argue that dropping severity labels altogether is itself an oversimplification, or an erasure of parts of the disability experience. Some people choose to call themselves “visually impaired” because they consider their experience with useful low vision qualitatively different from the experience of a “blind” person.

As with the debate over person-first vs. identity-first language, it is important to adopt the language preferred by the individual. However, there are a few lessons to be learned about severity labels in general. These include:

• Instead of asking about severity, ask about support needs. For example, instead of asking “How much can you see?” ask, “Are you a braille user?” or “Would high contrast help you navigate?” Don’t ask if an autistic person is “high-functioning” or “severe” but you can ask if the person prefers to communicate by speaking, typing or sign (or a combination depending on the setting).
• Recognize that supports typically meant for people with more severe disabilities can also benefit people with milder disabilities. People who can walk short distances might use a wheelchair for longer distances. People who have some residual hearing might still sign, and people who can navigate familiar environments visually might still use a cane in unfamiliar environments, at night, or when they want to easily disclose blindness to others.
• Above all, recognize that a person’s worth and potential for happiness is not defined by a severity label.