NTs Are Weird

I came upon two very interesting articles today.

In the first one, some European researchers have discovered a new way to communicate with people who cannot speak. These researchers have discovered that some patients in a “vegetative state” (that is, awake but not conscious, according to doctors) are in fact conscious and even aware of their surroundings. These findings reinforce my belief that we know far too little about the brain to determine what “vegetative” states are really a lack of consciousness. Even more frightening is the closing paragraph of the article: “She said the hospital did a study of 60 patients admitted with a diagnosis of vegetative state and 43% could communicate.” This is a British hospital, which, in theory, isn’t motivated by fear of lack of payment by patients. I wonder if the number would be higher if expensive treatments were guaranteed to be paid. It is also frightening – nearly half of those whom experts – doctors in this case – have diagnosed as vegetative are, in fact, not in a vegetative state.

Another article, this time in a local newspaper (The Denver Post), talks about the death of a 5 year old boy, due to lack of medicine. The medicine should have been paid for by Medicare, for which the boy qualified. However, due to computer glitches, incompetent social services workers, a pharmacy insisting on payment, and a slow ambulance service, this boy is dead. If any one of these things didn’t happen the way they did, the boy could very likely still be alive. To me, this demonstrates the need in the US to improve our social services delivery system. My thoughts and prayers are with the boy’s family.

I hope that I’ll someday live in a society that values life.

Apparently, to be “fully” autistic, one must meet the new diagnostic criteria – one must be unsuccessful and unhappy.

I know this isn’t in any of the official criteria, but it does seem to be in many people’s unofficial criteria. In their eyes, autism is so horrible that nobody with autism could actually be enjoying life, successful at a job, etc. Maybe someone with only “traits” or who is “Asperger’s” rather than autistic could, but not someone who is a real autistic (not my beliefs – I am repeating theirs).

Kind of convenient, huh? If you can’t be happy or successful, then it wouldn’t particularly matter if you received good services. It wouldn’t matter if your education was worthwhile. It wouldn’t matter if you had enough money to do more than simply survive. It wouldn’t matter if you had control over your own life. After all, no matter what, you will be miserable.

This is a great way of taking away power, and is related to other power-plays such as adding “can’t communicate at all” to the diagnostic criteria (therefore not needing to listen to the actual people with autism, because nobody in that group can tell you what they want, and thus nobody’s personal experience as an autistic is relevant).

And, like other “add-ons” to the diagnostic criteria, anyone who is even moderately happy or successful can simply be dismissed as someone who is lying about their autism status – they don’t need to be listened to. This is ironic, as you would think people would want to see autistic people happy, and it should make sense to ask happy autistic people about things that contribute to the happiness. But if it isn’t possible to be happy, then this question isn’t valid. So the happy autistics can be dismissed.

We have the right to be happy and successful. A happy and successful autistic should not need to justify that they are autistic – instead we should celebrate that someone has managed to find a good life for themself. Yet a lot of disability services and support is predicated on the idea of being miserable – people can’t fathom that someone who is not miserable might still be disabled, as it ties into the popular prejudice that disability always leads to misery (and, hense, to popular support for things like euthanasia – who wouldn’t want to die if they only had misery ahead?).

Yet, if you want to be taken seriously on disability issues, as someone with personal experience of them, or if you are seeking services, you find yourself in the unenviable position of explaining how miserable and broken and unsuccessful you are. I’ve literally seen adults break down and cry when they’ve read their own documentation used to get social supports – typically these documents are not a glass half-full type of document, but rather one that doesn’t even acknowledge that the person can have a glass. It is downright depressing to anyone.

We should have the right to the supports we need – even when we are happy and successful. Social support shouldn’t be predicated on the idea of us staying miserable. Heck, they should aid us in achieving happiness and success, something possible even for “real” autistics (no, happiness and success does not look the same for everyone – it is very individualized).

We have the right to a good life. That doesn’t take our autism away.

I’m hesitant to write this post as I fear some will think it to be “TMI”, but I will promise all my readers that I’m not going to go into any graphic details. I do want to write it because there is a lot of discussion going on about autistic people and whether or not the sensory issues we often experience would impact our sex lives.

There are a few things which aren’t always considered when discussing autistic people and sex. The first is romantic love. This is an emotion we can experience, and a powerful one. Like many of our emotions, I believe this emotion is felt very deeply in many of us. I didn’t particularly think it possible before I met my wife, but it is clear to me that I was wrong about that – I can and do feel it. Experiencing an emotion impacts the chemical balance in our bodies, impacts our body’s systems (for instance, your stomach may be impacted by fear or stress), and even changes the way we perceive stimulus. It is amazing, and wonderful, at how differently the touch of my wife feels than any other touch I’ve ever experienced. I might jump at most people’s touch, but I crave my wife’s touch. I believe love has a lot to do with this.

It’s not just that I feel love, though – it is also that she has love for me. We’ve learned (like any couple should) what is nice, relaxing, and, yes, even sexually pleasurable for each other. Love drives that discovery process – I want the person I love to experience pleasure. I love making my wife smile, whether it is simply a backrub, holding her hand, or something else. She, likewise, genuinely wants to see me enjoy her company. In fact, I believe both of us get as much joy in seeing the other person experience something pleasurable as we get if we’re experiencing pleasure. So of course we will avoid those touches that are unpleasant, and instead focus on things that are enjoyable.

Trust is important. And that comes as a relationship develops and the partners show their love to each other. There is a lot of touch I couldn’t tolerate from someone I didn’t have absolute trust in – but, heck, that’s one of the reasons I knew I should marry her! With the trust, a lot of the “fight or flight” reactions can be disarmed. You know you are safe. Now, instead, you can enjoy it rather than fighting it!

One thing that I think has given us an advantage over most couples is that we both know (not just because we’re autistic, but also because we both have experienced abuse) that it is important to communicate with each other. If I won’t like a certain kind of touch, I tell my wife, and she does the same. We also share with each other the things we would both enjoy – things we might not tell any other living soul. That’s what intimacy is about! I suspect a lot of “normal” marriages would be a lot better if everyone in them shared their desires (especially the embarrassing ones!) and let the other partner know what isn’t very fun.

Intimacy is also a lot more than just physical sensations. It is about being open with each other, about a connection between the hearts, about love for the other, and about sharing enjoyment. There are lots of ways to do this – it need not be what someone else wants to do. But because it is more than just physical sensation, the touch and other intimacy feels completely different than other types of touch. It simply doesn’t “feel” like other types of touch.

I promised I wouldn’t go into graphic details – don’t worry, I won’t. But I will give an example. I can’t stand the feeling of very light touch on me most of the time. The feeling of wind on my skin is almost unbearable. But there’s an exception: if my wife touches my face or hands or elsewhere, very lightly, I can very much enjoy that – it’s different from the wind.

If you wouldn’t enjoy certain types of “typical” intimacy, that’s fine too. If your partner loves you, this will not be an issue – they won’t want anything that you wouldn’t also enjoy (and if they are wanting something that would be painful or unpleasant for you, please listen to that warning siren – love doesn’t do that). People do exist who don’t feel a need to do things their partner doesn’t want, so don’t sell yourself short to a person who tries to force you into things you don’t want. I know that I would enjoy the relationship with my wife just as much if we didn’t do some particular activity. I wouldn’t feel like it was “missing something” because intimacy is far more than any single activity. I would still believe myself to be very blessed in my relationship! It is the intimacy that makes an activity enjoyable, and a violation of that intimacy would remove that enjoyment. That said, you may be surprised and find that, against all expectations, you do enjoy activities you didn’t expect to enjoy – but only with that person that makes your heart leap. If you don’t, don’t dispair though – it’s about finding those things that let both of you share your love for each other.

I’ve also written in the past about how my wife and I began exploring touch with each other (don’t worry, that’s not explicit either). It’s a way of getting past initiation problems and letting your partner know what you would enjoy, without completely removing all spontaneity, creativity, and surprise. But I’m sure this is just one method of thousands that accomplish the same thing. Do what is right for you!

I know I don’t usually write about non-autistic topics here, but I have to write about the marriage debate going on in California right now. At issue in the federal courts (likely to end up in the US Supreme Court before it is resolved) is whether or not gays should be able to marry – and whether voters can take rights away from unpopular minorities (California voters modified the State constitution recently to define marriage as the “union of one man and one woman”). Because autistics are often an unpopular minority, this is relevant to us. (note that this post is going to be US-centric)

I also believe, from personal experience, that there are far more people in the autistic community that don’t fit the standard gender and sexual molds than one would expect if there was no association between autism and GLBT (an umbrella term for gay, lesbian, bi-sexual, transgender/sexual) members. We also have in our community what seems to me to be a greater number of intersexed people – something relatively rare (although not nearly as rare as people think) in the non-autistic population. So I do believe that this issue affects us.

Yes, right now, the majority of people voting on gay marriage issues in the US are against gay marriage. That is one issue at hand in this trial – should the voters be allowed to restrict the rights of an unpopular minority, particularly on a state-by-state basis? In the past, states have restricted interracial marriage (US President Obama’s parents wouldn’t have been able to be legally married in several states when he was born), told us what kind of sex two consenting adults are allowed to have in private (recently overturned in Texas), and forcibly sterilized those seen as a “risk” to society (for such crimes as being disabled, blind, deaf, mentally retarded – unfortunately in some cases, this actually is still happening in the US, but not on the widespread basis that law provided for in the past). The reason that these laws are problematic is that the US constitution provides equal protection under the law to all classes of people. This means a state cannot take the rightful rights of a minority away, even when the voters want to. In addition, for granting rights, it is not required that a popular vote take place – that has protected us from many wrongs, and allowed many good laws to exist (two that come to mind that would not have likely passed if put before a popular vote are the ADA and IDEA).

An issue that is being discussed is the purpose of marriage. On one side, love trumps all. The pro-gay-marriage side believes that love and commitment to your partner is the primary reason for marriage. The other side believes that these are not the primary reason for marriage but rather it is about limiting sexual activity to one partner to create offspring (I couldn’t make that up) and then remain together to raise the child. Ignoring for a minute that marriage does not appear to prevent infidelity, and also ignoring that we allow divorce, this type of interpretation of the purpose of marriage is an insult to many. It says the marriage of those who cannot or will not have children is somehow less than the marriage of those who can have biological children. It devalues, even insults, those – typically heterosexual – relationships. Ironically, another argument being used against gay marriage is that it devalues heterosexual relationships. It seems only certain types of devaluation matter, and even more concerning, only certain types of even heterosexual relationships matter.

There are plenty of other problems with limiting marriage to man/woman relationships – there is no universal legal definition of male or female, for instance (seriously, go look for yourself and try to find one!) and any definition would likely apply – and prevent marriage – for some couples that nobody doubts are heterosexual. Determining sex is a lot more complicated than looking for a Y chromosome (despite what you learned in school) – not everyone has one set of chromosomes in their body (some have both XX and XY, depending on what cells you look at, for instance). Yet others have XXY chromosomes (both XX and XY in the same cell!). Nor can you look at sexual organs (might have neither, ambiguous ones, or ones that disagree with everything else like chromosomes). You can’t look at gonads, as plenty of people have the “wrong” gonads for their apparent or chromosomal sex (or perhaps both testes and ovaries). Even more difficult – some of these people don’t even know it (I mean, have you actually asked your doctor what chromosomes you have? If you haven’t undergoing genetic testing, you probably haven’t – I know I haven’t). Yet others have a sexual organ – the mind – that disagrees with some other part of their body. Is the mind less important than the genitals?

These aren’t the only issues – they are wide-ranging. Clearly, this is an important issue in our day, and a defining one for the United States. Clearly it is also controversial, with strong religious beliefs on both sides. I only hope that religion doesn’t get to define our laws – I can’t think of any religious organization I would want to obey unquestionably, not even my own. Nor would I ask anyone to like the choice someone else makes about a marriage partner. But we do have to give people equal rights – if don’t, we will find one day that we don’t have any rights either.

If you get a college degree, many doors will open for you. Well, at least that’s what the colleges tell you – before they take tens of thousands of dollars out of your pocket (or your future pocket).

One of the problems for autistic people is, often, we aren’t most in need of opportunity (although certainly the degree helps with getting opportunities – that is true). It’s not about not being able to apply for any work without a degree (there are many jobs that don’t require a degree), even though a degree does increase the number of jobs we can apply for. Rather, our problem with employment is that, often, there is a reason (rightfully or wrongly) that an employer wouldn’t want to hire us. And this doesn’t go away with a degree.

What do I mean? Well, without the degree someone might not hire you to work a lower paying job simply because you seem too “odd”, you lack transportation (you don’t own a car and drive yourself), you have body movements that make people uncomfortable, or you can’t communicate your abilities clearly. With the degree, you still won’t get the lower paying job, for, unfortunately, the same reasons. Nor will you get a high paying job, because even at that interview these traits that are seen as negative still continue to be seen as negative.

Unfortunately a lot of colleges and universities have marketed the idea that if you get a degree, you’ll get your dream job. For some people, that is true. For most of us, however, it is not. Too often the autistic person just ends up with a ton of debt that they have no way of paying when the dream job isn’t there for them.

Please don’t think I’m anti-education. I’m not. I think not having a degree has significantly limited my choices in employment, and that I would have many more options with a degree. And, I think having a degree is not a negative thing – it always helps strengthen your application. But I do also believe that too often the focus is entirely on a degree, rather than also addressing the issues that employers have with a particular expression of autism. It can be extremely hard work to overcome prejudice of employers (and, in some cases, legitimate concerns about your ability to do the job) – and a degree by itself won’t overcome that.

I would encourage any autistic person interested in college to pursue a degree. I think it is a very honorable pursuit that shows great commitment when achieved. It tells an employer, “I can finish things. I have some knowledge in this area.” That is a good thing. It allows you to apply for jobs that require a degree. That, too, is a good thing. But it doesn’t make the employer ignore the things he doesn’t like, including your presentation of autism. And, right along with a degree, I believe it is vital that autistic people get experience, help, and mentorship in the world of work. While most neurotypicals can figure out the unwritten rules of work, not all of us can figure that out by ourselves. It is important we gain insight into the parts of our being that make it difficult for us in work, and figure out ways of dealing with employer concerns over them.

That isn’t stuff learned simply by getting a degree. But it is just as important as any degree. For me, I got much of my mentorship early, before college, through a program designed expressly for that purpose. I got more of it in college (which I unfortunately didn’t finish – a regret I still have) while working during the summers. I learned things like the importance of typical grooming, why I should dress differently from work, what employers are really looking for when they ask interview questions, and why I should make darn sure I show up for work when I’m expected to show up. I learned how to handle stress (meltdowns aren’t appreciated by most employers, I’ve found), and how to get the time I need when I’m having trouble talking. For others, there will likely be different needs. But it is important to learn these things, which cannot be learned in a classroom. I learned by making mistakes and having helpful, kind, understanding, and, most importantly, respectful people guide me. (There were two traits these people shared – a desire to see me succeed at work and credibility in my eyes; They also treated me like a coworker rather than a project) This is why I am employed today.

Sure, I have a technical skill and know my field well. But that wouldn’t get me hired if it wasn’t for some failures and some guidance prior to getting the jobs I consider part of my “career”.

Unfortunately it is hard to get the type of mentorship I’m talking about. It’s also hard to get employers to focus on the things which are truly important, rather than prejudices and “gut instinct”. We must work on both parts of this – we need to create a society with less prejudice and we need to be honest with people who will have a difficult time getting work. There’s no magic solution, whether it is a pill or a degree, that will immediately open all the doors. It is possible to get a good job as an autistic person. But it is definitely not an easy thing for us. There’s a lot we need to overcome, unfortunately.

It’s about time that all of us minority groups – the ones who have faced discrimination for years – let the world know what an inclusive society looks like. We can start by telling about what it is not: It’s not simply following the law. It’s not doing only what you have to do. It’s not trying to avoid doing more.

It’s going beyond what we are told to do by authority. It is looking for ways to make people feel welcome and part of society.

It is going beyond the “basics” and beyond the “requirements”.

History shows us that the law is slow to catch up to human rights. Yet, even when there is not a legal framework to require inclusion, it is possible to still be inclusive.

It’s also possible to follow the law completely and be non-inclusive. In fact most of the time I know an organization is at least partially non-inclusive when I see that they have an office dedicated to “disability issues”. What this typically means is that they have some people that are trained in the law and know what the organization does and – more importantly to the organization – doesn’t need to do to follow the law. An organization without an “ADA Office” but a desire for inclusion is likely to be much more inclusive. Yet, ironically, the organization will use this same office – with a primary purpose of saving the agency money by not being inclusive – to “prove” how inclusive they are (they will show this office doing the things that the law requires them to do anyhow, even if they had no such office; Following the law is hardly a great example of how you go out of your way to be inclusive!).

If we truly believe that society should allow contributions from all members, we shouldn’t need a law. And we should routinely go beyond law. Inclusion can’t be legislated, after all.

The US society has long recognized the justice and power in allowing guide dogs in most public spaces. Today, a blind person’s guide dog can enter restaurants, movie theaters, airplanes, workplaces, child care facilities, and many other places that “normal” dogs cannot. Few have a problem with this, in part due to the excellent training that the guide dogs receive. (Ironically, this excellent training that allows most people to accept these animals is not the training that gives the dog special skills to guide a blind person, but rather the fact that the dog is simply well behaved and won’t be a problem in public. More on this later).

Of course not everyone always supports the right of a blind person to take their trained service animal into a public accommodation, but that isn’t surprising – people fight for the “right” to discriminate against many other people, too, even when most people support the rights of the minority class. But, today, most people seem to understand and accept the role of a guide dog, despite the vocal few who don’t.

Over the years the category of “acceptable” animals in public places has grown to include other service animals. For instance, an animal that pulls a wheelchair or retrieves dropped items gets the same access rights that a guide dog previously received.

But, like the rest of the disability community, the service animal subculture still has deep seated prejudice.

Too many service animal activists have focused on physical and sensory disabilities, intentionally distancing themselves from animals that provide help to people with less evident disabilities, particularly those disabilities that are “in your head”.

Out of this movement, there have come a variety of technical definitions for animals, like “therapy animal”, “service animal”, “emotional support animal”, “psychological support animal”, etc. Now you won’t find consistent definitions for all of these categories, but “service animal” is the top dog in this list. It’s the only category that allows the animal nearly unrestricted access. The others are, at some level, considered “pets”, at least to some people. The federal government has contributed to this, with a definition of service animal that includes, “Service animal means any guide dog, signal dog or other animal individually trained to do work or perform tasks for the benefit of an individual with a disability…”

At first, this sounds fine – and it goes back to a current thread among my blog posts: we as society don’t want people abusing the system, so it makes sense that we would create a definition of “acceptable” service animals. Someone who brings unacceptable animals into the public space, after all, could do harm to everyone who needs a service animal – or so the thinking goes.

The problem is that “allowing someone to leave their house” or “providing the support needed to avoid a meltdown” – very common things provided by animals to people with hidden disabilities – are not considered doing work or performing tasks, by the federal definition. The dog (or other animal, but I’m using “dog” for simplification here) may not need to do anything to give someone the confidence to go into the world – just simply be with the person.

Of course when you ask someone “Why is a guide dog okay, but not a support dog?” you get some strange answers. By far the most common one is the same ones that people with guide dogs faced decades ago – “What about people who are allergic to dogs?” or “There are sanitation concerns” or “We need to be a safe environment, and dogs bite.” I don’t generally question people further at that point, because I don’t particularly want them realizing that these reasons, if they were legitimate reasons to put a barrier up for disabled people, would equally apply to the service dogs that they already consider acceptable. But the arguments – and answers – remain the same. They’ve also been dealt with by organizations that use animals in other settings (animals that are not considered service animals), such as hospital visitation programs (do you not think a hospital is concerned about sanitation, allergies, or safety?). There are solutions to these problems (although they rarely are one-size-fits-all type of solutions).

I work for a company that encourages you to bring your pet dog to work. At any time, we probably have between 5 and 10 dogs in our small office building. Sometimes they are sitting in beds, sometimes they are leased, sometimes they are just walking around exploring on their own. These are not specially trained animals, but rather simply pets. Of course there is an expectation when you bring your pets to work: they must be well behaved, well socialized (to both dogs and people), non-agressive and non-territorial. I don’t think we’ve ever told people that they should be clean and not taken out while sick, but hopefully that goes without saying. So I know that even pets can integrate into places that normally disallow animals.

The key to the animal integrating well into a public space is not whether or not the animal knows how to respond to a curb cut for a blind person. Instead it is whether or not the animal is a risk to people and animals around it. This is really the key, and this is really what needs to be legislated. I don’t care if the dog is specially trained or not, nor do I care if it can perform a special skill, if it is attacking a child! The skill is irrelevant, as should be a narrow definition of acceptable uses for a service animal.

The definition needs to change. An animal should be eligible to be considered a service animal if the animal enables a disabled person to be part of society. It really is not more complex than that. That said, it is appropriate to impose an additional requirement: that the dog be well-behaved.

I think we could go a long way to both answering the fears of the people who think that allowing “support animals” would cause everyone to bring the family pet to the restaurant by simply requiring people using service animals to have sought independent confirmation that their animal is safe in public places. It would also answer legitimate concerns about whether or not it is safe to allow service animals in public. I realize that there is no fool-proof test, but at the same time there currently is no requirement on independent confirmation of safety, so while we wouldn’t be 100% certain of safety, we would be a lot more certain than under the current system (which focuses on what jobs the animals do rather than the safety of the animal). As an example of the starting point for this, I will suggest the AKC’s Canine Good Citizen Program. I suspect more involved tests may be appropriate before granting an animal access to public spaces that normally prohibit animals, but this is the type of thing that is actually important when talking about bringing animals into the public space. Whether the dog comforts a person enough to let them enter a new building or whether the dog is the person’s “eyes” is irrelevant.

Maybe one day we’ll see these changes. In the meantime, we can influence those around us to accept more diversity than the minimum required under federal law. The ADA and similar laws were never intended as examples of perfection, but rather simply as starting points.

The local paper, the Denver Post, ran an article about the problem of people calling 911 (the US all-emergency phone number) instead of visiting a doctor’s office for urgent care needs (that is, things that need to be handled quickly but are far from life and death). It seems that many times this ties into another disability problem: lack of affordable, convenient, usable transportation. It turns out that you can get an ambulance. You can’t get other transportation oftentimes if you are poor and don’t drive.

Many politicians in larger urban areas (like Denver) probably pat themselves on the back thinking, “See how progressive we are? We’re doing the bare minimum required by federal law to create an accessible transportation system. So now nobody has the excuse that they can’t get transportation to work or wherever else.” Let’s look at that system’s rules in Denver, though (they aren’t worse or better than most other US cities), if you can’t ride the standard bus (because of cognitive/sensory issues, location of the stop, etc):

- Cost: twice the standard fare if using Access-a-ride instead of a standard bus. Note that it is twice the standard fare, not twice the disabled fare. It is between $4 and $24 per ride, depending on type of service. I pay $56 per month for a bus pass from my employer that allows me unlimited riding on all services except the airport bus. The cost if I took Access-a-ride only to commute to work (about 20 days per month, 40 trips total, at $4/trip): $160. Ironically, non-disabled people typically have higher incomes.

- Travel time: From the Regional Transportation District website: “For example, a trip between 0-5 miles may require a travel time of 45 minutes” and “ADA allows providers like access-a-Ride to take up to twice the time it would take for a passenger to make the same trip via fixed-route bus service” – it takes me up to 1.5 hours to take the regular bus to work, a trip I can make in 20 minutes by car or motorcycle. Thus, with these rules, my daily commute could take 6 hours total (3 hours each way).

- Wait times: Access-a-ride will only wait 6 minutes per passenger. So if you are 7 minutes late, you must pay for a taxi out of your own money (taxis are expensive in Denver – it makes the $24 maximum fare for Access-a-ride seem cheap). Note that while you can’t be more than 6 minutes late, the bus can be up to 15 minutes late according to their rules. The bus may arrive anytime within a 30 minute window (well, actually 45 minutes, because it is allowed to be 15 minutes late) but will not wait any longer than 6 minutes regardless of when it arrived. So, basically, you need to plan 45 minutes on each leg of your trip where you have nothing going on. This is in addition to the twice-normal-time that the bus is allowed to take (making my bus commute into a 7.5 hour per day commute!). You can call if you are running late, but it might take an hour or more for a replacement bus to arrive.

- Certification: To get on this service, that takes no more than 6 hours (well, up to 7.5 hours if you count the 30 minute windows and allowance for the driver to be 15 minutes late) to do my 40 minutes of commuting, you must be “certified”. You need a doctor to agree that you need the service and to complete a “functional evaluation”. Oh, you have to re-do this every 4 years…

- “Subscription Service:” If you make the same trip again and again, you can apply for “subscription service” so that you don’t need to schedule the trip every single time. However…the website notes that this is “popular” (uh, how do they define that?) and that there is likely to be a waiting list before you can set up subscription service.

- Reservations: You must make a reservation at least one day in advance. Urgent needs? Too bad – you should have known about it a day in advance! Note that calling a day in advance is no guarantee of availability (they can “suggest” an alternative time anywhere in a two hour window, starting at one hour early or ending one hour later than your requested time), nor can you call more than 3 days in advance to find out if it will be available (and perhaps arrange alternative transportation if it is not). You must also remember to tell the reservation agent if you are bringing someone to help you – or they may be denied boarding.

- Soonest return trip: You cannot schedule a return trip less than one hour after your arrival time.

- Penalties: You must cancel 24 hours in advance, or you are penalized. You are also penalized if you “miss the bus”. Note that the return trip is also counted against you, separately, if you miss the originating trip. 4 of these in a month and no rides for you – for two weeks. Note that there are no penalties for the bus agency if they break their rules (repeatedly running more than 15 minutes late, for example).

- Guests: You can only take one other person with you. If you have a personal attendent, then that person will count as the one person. Have a bunch of friends wanting to watch a movie with you? They’ll have to go on a different service. Ironically, even children count as “guests” – despite the fact that the non-disabled bus service to the airport allows two children to travel free to the airport with an adult. But not on the disabled-person’s bus! At least you don’t have to pay for a personal attendent, if you can convince a doctor and the bus service it is necessary, but kids and friends have to pay the twice-standard-fare (even if they have a regular bus service pass), unless they are under 6. The bus service may accommodate more guests, but only if they feel that they can at the time – they are not required to, and you can find out there is no room when the bus shows up, not at the time of reservation.

- Packages: You can bring 3 “packages” with you, such as shopping bags. They can’t weigh more than 20 lbs, though, so pack light!

- Service animals: You can bring one, but only if approved in advance. Note that you don’t need this approval for the standard bus service.

- Lost card: If you lose your ID card, you will need to obtain a new one before you can ride the service without penalty (remember, 4 penalties cause you to lose two weeks of service; don’t ask me how you get to the place to get a new one if you can’t ride the bus, I don’t know either). Lose it 3 times in a year, and no rides for you.

- Emergencies: If there is a natural or man-made disaster, the bus service can cancel all rides. Of course why would anyone need to travel in such circumstances? Ironically, they suggest “911″ as an alternative.

- Cabs as an alternative: You can get a cab instead – you have to pay $2 plus any fare over $14. Remember to tip! You can’t do more than 4 of these in a day. Oh, ironically, cab services don’t necessarily meet ADA accessibility standards that buses have to meet – as the bus service notes, “Please remember that most cab companies provide only limited services for persons with wheelchairs. In many cases, you will need to transfer yourself from a manual folding wheelchair in order to be able to use the service.”

Ask yourself, if you aren’t currently a user of this type of service: could you plan your life around these rules? Would you be willing to commute nearly 8 hours for an 8 hour/day job, when everyone who can drive can do the same commute in 40 minutes per day? If you were living on limited income – look up what social security pays – could you afford even this service? Is it a surprise that some people are calling 911 for emergency medical transport, simply because there is no usable alternative?

In the US, the entire service delivery system – for all government services (not just disability services) – is based around one core idea. No, it’s not “How can we help people who need help with survival?” Instead it is “How can we make sure that we don’t give these services to someone who is not entitled to these services?” In other words, the key to service delivery is preventing fraud.

Of course nobody wants to see abuse of services set up for people who need them. But this sets up several false dilemas and stereotypes that become pervasive in the disability services system.

The first one is that people can’t be taken at their word when they “claim” to be disabled. I’ve blogged before about this – the absurdity of asking someone with lifelong blindness to prove that they haven’t miraculously regained their sight (after all, if they did, and didn’t tell Social Security, they would be committing FRAUD – and we must stop that!). But this sets up a high bar for people who are legally entitled to services, a bar which keeps many legally entitled persons from actually accessing the services. I also suspect it doesn’t stop much actual fraud (much like airline security rules manage to inconvenience plenty but not actually stop terrorists with explosives from getting on planes; It’s hard to stop people who break the rules, no matter how inconvenient you make things).

The second concern is that of entitlement. There’s this idea that everyone should eat, for instance, as that’s a human right, but only people entitled to government-funded food (I’m ignoring our massive farm subsidies for this discussion!) should get that food from the government. On the surface, this sounds fine – people who need the government food should be the ones that the government feeds, not people who don’t need it. But there’s a couple problems with this idea. The first is the difficulty in defining who exactly needs the government food – I’ve been in the situation where I needed help eating (not help buying) food , yet found that I wasn’t entitled to any program that I could afford to use. I almost starved. Yes, I realize that this is a hard one to figure out.

But that’s not the only problem with entitlement thinking. The other problem is more sinister – it’s one of pity. It is the idea that there are some people we should feel sorry for, that we should pity, simply because they have a different profile of skills and abilities than most. It is these people that we should have programs for – we should provide for the people we pity, not others. This moves services from the category of “human right” to “charity”. This lets us deny services to those who we don’t feel sorry for. That is dangerous ground to remain on, but is inherit in a system of entitlement rather than a system of human rights.

These are hardly the only problems with our anti-fraud focus for services. The simple problem is that people who need services – and for whom it is a life and death matter, or at the very least a major quality of life issue – are not getting them simply because we’re worried about someone else scamming the system. We’re punishing the people we’re supposed to be helping, because of people we don’t want to help. How ironic is that?

Many years ago, I learned something that changed my life.  I had no idea how profound this was at the time, although I did immediately see the power of the change.  It’s simple: I decided to move on from the abuse.  In my case, I did this with God’s help, although I think non-religious people could probably find other ways to make this possible.

Let me explain what I mean when I say I “moved on”.  I did not forget the abuse (I still sometimes wish I could), nor did I simply put a smile on my face and pretend what happened to me wasn’t “really” all that bad.  No, part of moving on requires acceptance that what I went through was something nobody should ever experience, a crime that showed the evil humanity is capable of towards others.  I do not believe it is possible to “move on” until that is fully grasped.

No, instead, to “move on”, I needed to let go of that which I was entitled to, but which I would never get.  I was entitled to revenge.  I was entitled to someone else – my abusers in this case – being forced to live with what I’ve lived with.  I was entitled to have them make everything right in my life.  But, this simply wasn’t going to happen.  There is no way to undo the abuse, and revenge would simply cause more destruction – not healing.  In fact, revenge would destroy me far more than the abuse did.

This is what forgiveness is.  Others (such as Eva Kor) have tried to explain it, but it is hard for people to grasp how it is possible to recognize and acknowledge a terrible wrong done to you, while at the same time giving up claim to that which is owed to you.  But, I can say this: It has changed my life.

Forgiveness has given me reason to look forward, not back at the abuse.  It has given me the strength to focus on preventing similar abuse, rather than focusing energy on abuse that has already occurred and that nothing could prevent now that it has occurred.  It has returned my joy – the very thing that the abusers robbed from me.  And, it has placed me in the position of power over the abuse, for I, and I alone, have the power to forgive my abusers in my heart.

I will mention some things that forgiveness is not, though, lest people make mistakes in considering this.  It is not a lie.  For forgiveness to happen, the truth must be known.  That includes the truth about the abuse.  You can’t forgive a debt without acknowledging that there is a debt.  And forgiveness does not mean that I will forget or stop speaking about what happened.  It simply means that I will no longer desire the debt to be paid by the abusers to me personally.  Nor does it mean I forgive them of the consequences of their actions, other than their debt to me.  For instance, if they violated the law, they may still owe society – and I will cooperate with society by being honest.  But I will not do it out of a desire for revenge, rather simply a desire to speak the truth and acknowledge that wrongs were committed.  Finally, it does not require their acceptance of my assessment of the wrong they did or the debt they owed me – nor even acceptance of my forgiveness.  Those things are their choices, which are not my responsibility, but their responsibility.

I also believe forgiveness of this type does not mean that abuse should continue.  Nobody has the right to abuse another person, regardless of whether or not someone has forgiven them.  Great effort should be made to end any ongoing abuse.  Only then can someone “move on”.

In addition, forgiveness isn’t magic. It is powerful – it does change you. But it does not heal every would. Ghosts of the past will still be there sometimes. But you will find that their power over you has diminished greatly.

I realize this is a hard concept for people to understand.  I had a lot of internal debate about whether or not I should post it, because I am certainly not good at explaining this, nor do I want anyone to think that this is the only thing required to be healed from abuse.  But, in the end, I decided that if this helps one person move on from abuse, it is worth doing so.  I also know that what I wrote is insufficient to explain this concept, and so I pray that anyone living with the demons of the past will receive whatever they need to grab onto the present – the “now”.  This may not be the only way to “move on”.  But if you have tried everything else, I do encourage you to read up on this concept.  I also encourage anyone interested in exploring this concept further to read Desmond Tutu’s book, No Future Without Forgiveness (no, I don’t receive any money if you click on that link!).

For me, this change required God’s help.  I encourage others who find value in God’s help to seek it on this – to ask, to seek, to find out if this is the right path.  But I suspect the power behind forgiveness is something that can help all of us, not just people who see matters of faith the same way I do.  I can say that – of all the things I’ve done in my life, this was the third most significant choice I’ve made (the first and second ones were gaining a relationship with my God and my wife).