when disability is expensive

Some inclusion requires ongoing effort

Inclusion means a lot of different things. Sometimes inclusion can be passive, sometimes it needs setup, and sometimes it needs ongoing effort and/or expense.

Sometimes inclusion is passive. In that sense, it’s the opposite of active exclusion.

Some examples of passive inclusion:

  • Meeting in a building that happens to be accessible.
  • Not harassing disabled people with intrusive unwanted “help”
  • Seeing a conspicuously disabled adult alone in a public space without assuming it’s somehow an emergency or that they’ve escaped from needed supervision. (And therefore not bothering them.)
  • Raising no objection when people bring service dogs into a store or some other place
  • Not having an admissions policy that prohibits people with certain disabilities from enrolling in a school

Sometimes to get to passive inclusion, you have to spend some time changing one thing or setting it up. After the temporary period of active change, the inclusion becomes passive.

Some examples of inclusion that requires setup, but may not require ongoing active effort:

  • Building a wheelchair ramp
  • (Or renovating an unsafe ramp and bringing it up to code)
  • Hiring an architect knowledgable about accessibility when you’re building a new building
  • Making your book available on Bookshare 
  • Changing a restrictive admissions policy

Sometimes there is no passive way to include people. Sometimes inclusion means active ongoing effort or expense

A couple examples of active inclusion:

Captioning:

  • Some people need captioning to understand speech reliably. (Including many people who can hear).
  • Captioning takes time and human effort. Computers can’t do it; it has to be done by people.
  • Live captioning has to be done by experts (in CART or TypeWell), and it’s inherently expensive.  
  • CART or TypeWell captioning events/classes in real time takes time, effort and expertise. It is inherently expensive.
  • High quality captioning also requires ongoing collaborative effort with the providers - people doing the captioning need to understand the words you’re saying in order to transcribe them accurately. So they need  to be provided with any acronyms, technical vocabulary, or culturally specific words you will be using.
  • If videos and events/classes aren’t captioned, a lot of people are passively excluded.
  • There’s no cheap or passive way to include them. Inclusion requires effort and resources.

Alternative format materials:

  • Some people can’t read standard print.
  • In order to access education or events involving print, they need materials in an accessible format
  • (Eg: electronic copies, braille, scans, large print, audio recordings, or something else, depending on the person)
  • Someone has to convert materials to an accessible format, every single time. This is inherently time consuming, and may in some cases require expertise or expensive equipment. 
  • Every time materials aren’t converted, print disabled people are excluded. 
  • There is no passive way to include print disabled people.
  • Inclusion of print disabled people is only possible when communities and schools and teachers are willing to put effort, time, and resources into inclusion.

There are many, many more examples of all three types of inclusion. When we talk about inclusion, the conversation needs to be about all three. Passive inclusion, setup inclusion, and active inclusion are all vitally important. People with disabilities are worthy of time and money.

Tl;dr Sometimes inclusion is easy and sometimes it’s hard. Sometimes inclusion means that you stop actively excluding people, and include them by letting them be. Sometimes inclusion means setting something an access feature initially, then including people by letting them be. Sometimes inclusion takes ongoing effort and expense. Sometimes inclusion means you stop passively excluding people, and start actively including them. All of these forms of inclusion are vitally important.

People with disabilities are worthy of money and effort

In the part of special education community that promotes inclusive education, I often hear advocates say things like “inclusion doesn’t have to be hard,” “inclusion doesn’t have to be expensive,” and “inclusion doesn’t require special skills.”

This isn’t really true, unless we exclude a lot of people from “inclusion”. Some access needs are easy to meet; many are not. We can bring some people in without too much trouble. In order to commit to full inclusion, we’re going to have to be willing to spend money, acquire expertise, do hard things, and make changes.

For instance, people who can’t rely on speech as their primary means of communication need support learning to communicate. This is inherently expensive:

  • They usually need expensive devices
  • (The cheapest good option is an iPad with a $200 app; some people need dedicated devices that cost upwards of $10,000.) 
  • They also usually need therapy
  • Having a communication device doesn’t solve all of someone’s problems; they also have to learn how to use it
  • (And they usually need help learning how)
  • Or they need something like RPM, which is low-tech but requires twice-daily 1:1 lessons which use scripts that generally have to be prepared in advance specifically for that student.
  • If they are in school, they need teachers who know how to teach them (which generally means that experts have to teach their teachers how.)
  • AAC communication is slower, and can be hard to interpret
  • Inclusion doesn’t happen automatically; teachers have to learn how to make sure AAC users are able to participate and be heard in class
  • (Eg: If someone isn’t using complete sentences yet, it can be hard to know what they mean. You have to be willing and able to do the work of helping them to clarify).
  • (And: if someone responds slowly, you have to proactively make sure they get a chance to express their thoughts in class discussions)
  • All of this requires money, expertise, effort, and willingness to change
  • If we’re only willing to consider cheap options, people who need communication support are left behind

Another example: People need to be able to get into the building

  • Many buildings were built incorrectly
  • They may have large flights of stairs at all entrances
  • They may have many floors that can only be reached by stairs
  • They may not have any accessible bathrooms
  • The bathrooms may all be too small to enter in a wheelchair (which means there’s no way to fix them without moving walls)
  • All of the doors may be big and heavy
  • Often, there’s no cheap way to fix this
  • There may be inexpensive starting places; we can’t stop there
  • If we care about including people with mobility disabilities, we have to be willing to spend money to fix buildings
  • We have to hire architects who have expertise in accessibility
  • We have to make sure that people with mobility disabilities are part of the conversation, even if no one with a mobility disability has expressed interest in accessing the building recently
  • We have to be willing to make changes that make the building look different, in ways that may mean changing or destroying things that longtime users of the building are emotionally attached to.

We can start with the low hanging fruit; we should not pretend that all fruit is low-hanging. A lot of access needs are inherently expensive. There are a lot of needs that no one even knows how to meet yet; the expertise we need does not yet exist. If we want to commit to full inclusion of children with disabilities in schools; if we want to fully include adults in all aspects of society, we need to be in it for the long haul.

tl;dr In order to stop excluding people with disabilities, we’re going to have to spend money. We’re going to have to bring in expertise and develop expertise. We’re going to have to do difficult things. We’re going to have to make changes. We’re going to have to start seeing this as normal. People with disabilities are worthy of money and effort.